In case you've ever wondered...

A friend forwarded this article a little while back.
Every time I read it, it resonates with me.
Not all circumstances are similar, of course, but some of the thoughts and feelings behind them are.

She says it like it is, and she says it really really well.
If you can spare five minutes....
7 Things You Don't Know About Special Needs Parents

Why speech delays are hard on the heart...

We shared a lovely late-afternoon visit with friends the other day.
Enjoying the great outdoors, with all it's warm sunshine and springtime wonder.
When I looked around for K, she was nowhere to be found.
Hmmm, better go investigate.

I soon discovered she'd gone inside and was sitting on the step in the foyer.
I asked if she wanted to join us; she just darted back inside.
Hmmmm, perhaps she's hot...
A few minutes later I checked on her again.
Again, I asked if she wanted to join us; again she quickly turned back inside.
Hmmmm, maybe she's just not feeling socialable...
Sometimes she takes a few minutes to herself here and there, even with favorite company.
Our friends soon left and we were cleaning up and I looked inside.

Here K had been trying to get her shoes on all by herself.
When she couldn't, she simply sat. And waited.
She was distressed when she learned that our friends had left without a hug goodbye.

Why didn't you tell me!? I ask her. I lament to myself.
It's not like she physically can't tell me, but I know and I try to remember, there are times when so many building blocks of communication (even though they seem extremely simple to the rest of us) are hard to form into action. She could've put on her boots (she knows how, for the most part). She could've opened the door and said "help you." But when she gets overwhelmed, she gets stalled. And so she waits.

It's in times like these my heart simply aches to hear the words:
Mama, please help me.
Mama, this hurts.
Mama, I am happy or sad or mad or tired or hungry or WHATEVER!

I call her name - she doesn't usually answer me.
It's not like she's being rude or purposefully difficult - she simply doesn't realize that it is her turn for a response. We are teaching her, slowly but intentionally, and it takes time.

I repeat repeat repeat repeat repeat. And repeat. Annnnnd repeat.
And. Repeat.
And it's hard not to get frustrated or discouraged, and sometimes it's hard not to get short and snappy.

It's clear she's fallen down or bumped something --- but again, it's a guessing game. I go to the room where she's been in last to see if I can see a situation that has caused the stress. See if I can put the pieces together so that I know what has happened and what owie needs mending. Often times we can figure it out - other times I never know what hurts or why.

I see other kids, way younger than she is, conversing with their mamas, talking about their day, their experiences, their wants and needs. Speaking with great ease. And I am blown away. It never ceases to amaze me, this gift of communication. We don't always use it wisely :), but when we do - wow.

So many aspects of this life seem normal already, and we don't think twice about it.
Other times - it still hurts.

Sweet Sleep.... Issues....

I vividly recall that season of slugging through the days, crying a lot, feeling altogether like I had come to the end of myself entirely, like I had nothing left to give. Why??

If you asked me what one of the biggest challenges has been since K's birth in June 2007, I would probably say..... S.L.E.E.P.

Yes, there were a myriad of doctors appointments which thankfully tapered off some time between 18 months and 2 years.

Sure, there was the sky-rocketing anxiety that threatened my sanity from time to time frequently.

Oh, and there has been the wrestle between frustration and patience as we have tried to navigate our way through the development challenges to find the best balance between forcing and facilitating learning.

Yes. There have been things that have been H.A.R.D.

But, the one constant challenge over the past five years has been sleep. Or, rather, the lack of it.

When our first daughter was born in December of 2005, "sleep skills" was one of those first things I focused on. Whether or not that was a great idea is a discussion for another day ;), but very quickly she became a great night time sleeper and I was thankful.

Fast forward 18 months with the arrival of Baby #2. And suddenly everything was different. And I quickly realized that I was going to grow in my abilities to adapt to a new kinda normal, whatever that would be.

Each situation is unique. For us, K would settle quickly at night, especially after the upheavals of teething had passed. And she would sleep solidly until 12am. After that, it was anyone's guess as to how our night was going to go. Sometimes only awake 1-2 times, and easily settleable. More often, though, I was in and out of her room several times, losing track of how often I'd been out of bed. Many times, especially if she had been awake a few times already, she would be up for an extended period of time, anywhere from 1-3 hours. Thankfully, she was usually able to stay in bed (usually her own, sometimes ours) during this time and wasn't up to play toys or look at books. She seemed to know that night time was for sleeping, not playing, yet her body wasn't fully able to cooperate with that notion!

Since that time I've talked with doctors, pediatricians, therapists and done my own internet research. Sleep issues are a common thread with many families, but can be an ongoing problem for kiddos who have additional challenges to work through.

What has worked for us?

Thankfully, after 5 years of trial and error, I think we've managed to gain some wisdom in this area of our family life and are making progress (though sometimes it feels like we're taking a few steps back!).

A few things we've tried... what has helped... what hasn't worked at all...

The key for us, like most life situations, is trying to discover the root issue of the problem. For K, her body has slightly lower tone than normal, and is more sensitive to things like warm/cold, weights of different fabrics and blankets. For us, we steer clear of flimsy little pretty nightgowns in favor of heavy, warm, flannel jammies or lighter cotton jammies, but always always long sleeves and full pants. We tried the cute little girly nightgowns and for months we barely slept a wink!! When she was really little, the weight of the baby quilt was not sufficient, so I actually took a flannel sheet, tucked it along one side of the crib mattress, tucked her underneath and then pulled it as tight as I could over her shoulders and trunk of her body and tucked it into the opposite side of the mattress. The extra pressure seemed to help keep her settled. This worked quite well until she got too big and too strong ;).

Also, like many young kids, but particularly for those who have an even more intense time processing the world around them - becoming overtired is a recipe for night time disaster. Even at 5 years, she still benefits from a 30-45 minute cat nap --- several days without it and our night times spiral out of control. Combine this with any additional over-stimulation like family vacations, holiday time with family gatherings, adding a third baby to our family, or any such activities, and it can take several weeks to get back on track!!

One other thing we were intentional about for a while was actually increasing the pre-bedtime activity a little bit. Like 20 minutes of wrestling or rumpus play of some sort. The theory is that with lower tone, a body requires MORE activity to satisfy the body's need for environmental input and stimulation. If the body does not receive adequate information throughout the day, it seeks it out at night as a restless sleep. We did find some merit in this theory, however there is some debate as to whether the activity should come earlier in the day (morning) or at bedtime. My guess is that it really depends on the kid.

I have occasionally brought K into our bed, or have slept with her on the couch (when she was still quite little, like before 2 :P, and was teething soooo hard and OH it was tough!). However, we have not found this to be the best long term solution. Mostly because she is soooo snuggly and wiggly and it is hard to get any rest at all then!! What really works well is to store an unused crib mattress under our bed for those nights that are challenging. K shares a room with her two other sisters, and so on those nights where she is more restless and I don't want any other little ones up with us ;), she gets to sleep on our floor. I can settle her as I need to, I'm not losing sleep (literally!) over whether or not others will wake up, and (amazingly) I've learned to sleep through some of the commotion too!!

We have ventured into the realm of medication a little bit. Under the guidance of a doctor, we tried melatonin and also a light sedative, first alone and then in combination. For some people this has worked well. If it works, and it is right with your doctor, then by all means. For us, this did not work at all, but instead made things WORSE! I noticed that K was even groggier during the day, harder to keep awake in the evenings, and even a more restless sleeper from feeling extra tired. With the advice of our pediatrician, we followed the recommended strategy, and I could do it for a couple of weeks because I knew it was a solution we needed to rule out. However, I was glad to give it up, and we haven't tried it since!!

Particularly helpful has been the sleep records I've kept for the past year and a half. It has helped me to identify patterns and track progress with a variety of strategies. And it has been something tangible that I have shown the doctors as I've consulted about how to manage this. But honestly, the biggest benefit has been a visual representative of why I often feel so tired. Like most things in life, even the tough stuff, when it persists long enough it starts to feel normal. And it is easy to lose perspective. Even though terrible nights may become "normal" it is still okay to feel tired and groggy too! Sometimes I forget that and feel discouraged by the fatigue rather than understanding of why it still exists.

The highlights show the nights that have been a write-off (which I consider up 4 or more times, or unsettleable for a period of time). It is encouraging to see the progress that we've made since this time last year (a LOT more highlights!!!). For the month of May even though we're usually up at least once or twice, we've only had one night that has been "rough rough". YEAH!!

Personally, one of the biggest hurdles for me was overcoming the self-pity. For quite a long while, I felt sorry for myself because I couldn't get enough rest. Of course, my fatigued perspective was a bit off, and I didn't realize this for what it was. It came along through sneaky thoughts like "oh .... poor you.... you are sooo tired. You haven't slept in weeks... months.... years" or "it is so hard to feel so tired all the time." And you know, it is tough!! It is not fun not having any sort of control over how terrible and tired you feel. And it is a challenge for sure to parent other children alongside this or stay positive or even sane. But once I realized how the self-pity was affecting me and dragging me down, I began to make conscious choices to pray against it, to make positive choices, to accept it - even EMBRACE IT - because there is so much learning that can happen when we feel weak, inadequate and altogether low!! It still surfaces from time to time, but now I feel like I can reason with those feelings, accept them for what they are, and note that yes, this level of fatigue isn't easy, but there are lots of things in life that aren't easy. I don't want to waste a single minute feeling sorry for myself!!!

That's a long post, but it's been a long-lasting issue!
Happy to say, though, that it looks like things are improving :P.
Sweet sleep, ya'll!!

The Waiting Game

Seems like, most days, we are waiting for something.
May be something big, or something small-ish, but waiting just the same.
In this instant-gratification world, that's a good and necessary lesson, still not an altogether easy one!


We are presently waiting to find out whether or not we get funding for K to have a helper in school. This year we did a family adventure, and experimented with the route of learning-at-home. It has been an amazing experience (another post, or several :), for another day), and especially lately, I've been experimenting with connecting K to our learning time as well.

In some ways, it has been a challenge to find something suitable for her.
In other ways, it has been a journey of discovery for us both and actually can be very rewarding.

A few lessons I've learned along the way....
1. Often I have to confront my often-unrealistic expectations and set them aside. It's true that we all learn at our own pace, and no where is that more true than when you are dealing with development delays. When I impose my own goals (or desires), frustration results for both of us. When I am willing to follow her lead, and present her with suitable and slightly challenging opportunities, I am often surprised at what happens.

2. I am not great with big messes! And it seems like most "tactile learning activities" are quite disastrously messy. I like to keep the water in the sink (as opposed to all over the walls and floors - outdoor water table season is my handiest friend!!). Finger painting is best done in the tub, with soap paints (and even then I am not a huge fan of those bathtub crayons!!). The new-to-me idea of Tot Trays is great --- but what about those who have difficulty with fine motor skills and find such activities problematic?

I am still on the hunt for workable ideas, though now that we are heading into spring and summer, I can take all these messy ideas outside for hours of fun!!! The biggest challenge for me has actually been overcoming guilt over not creating more opportunities for K to experiment. I am recognizing that some seasons are better suited for this than others - like summer (outdoors) vs. winter (indoors) - and seasons of development too - and until then we'll use strings of beads vs. individual ones (easier to clean up, not a choking hazard), and glue sticks and shreds of paper over paints!

3. Little bits of time are most helpful. I find it much more beneficial to break up the learning into smaller chunks of time. First a few (very very very simple) videos on shapes OR colors OR counting to 5. Then at the table we do a few activities that involve the same theme - colors OR shapes OR counting. Then we bring out the "big kid workbook" and let her choose a page and practice with a pencil and sometimes stickers (if I think of it!) for a while.

Seems to work for us.

What learning strategies have worked for you?
What developmental issue were you trying to address?
Any outside resources that you have found helpful?

But she can DANCE!

Frequently Sweet K blesses me.
I watch her, life spinning around her, with her sweet smile and I ask her, ask myself....
"Do you know how beautiful you are?"

Just this afternoon, she wandered into the living area after her rest time. Hearing Older Sister's music playing, she starts dancing away. Not wild or exuberant, but honest and sincere all the same. Spinning in a circle, arms held high, a glorious smile on her face. A ballerina on her own stage.

Milestones are a challenge. It isn't always easy. We find it hard, sometimes, to keep perspective.
We don't jump (yet!!).
Running is in the process of becoming more graceful.
Some day, we'll get on a bike and ride like the wind.

But, she can DANCE.
And it is beautiful!

on the iPod: Ordinary Miracle, Sarah McLachlan

Love this song.
First heard it at a wedding when we were in the midst of adjusting to different expectations and waiting for test results (not my favorite thing to do!).
Somehow, found room to breathe a bit when I listened to these words.
Thought I'd share it :).


Wrote these words when Sweet K was only wee little... thought I'd share them too!


Child development is a per.snick.ity issue. Nothing like the words "normal" or "delayed" or "slow" or "future unknown" to get this mother hen's feathers (completely, utterly, fantastically!) ruffled.

HOWEVER. I am learning learning learning about the beauty of this journey. Things with Sweet K are moving along quite well, actually, and maybe that makes this so much easier (it does). Yet I have the opportunity to see the miraculous unfolding of learning that most of us take for granted because a) it comes more naturally, b) it comes quicker and c) we're never taught to SEE those incremental - yet just as incredible - building blocks of wonder.

When Sweet K was about 3 months old, I heard Sarah McLachlan's Ordinary Miracle for the first time. It struck such a chord in me. The first time I'd smiled, or hoped, or laughed in months.

In church we will be celebrating Child Dedication (May 24), and I contemplate why I want to participate in this occasion. It is my view that children are a precious gift from God, shared with us for a variety of reasons. And it is my desire to nurture and delight and love and learn alongside, and hold that gift with open hands before the One who created her.

Hug-A-Munk!

This past winter we were able to spend some time in Florida.
While we were gone, I created a private blog to share some of our experiences with family and friends. This is a post that I wrote about one of our adventures....

---

Last Saturday, we were able to visit Epcot Centre.
It was our longest day yet. And the longest day we'll have.
Though it was long, the weather was nice and we had fun.

The biggest blessing, though, came through Sweet K and her sudden desire to hug a chipmunk!!

As I've mentioned, Sweet K just IS NOT into rides right now.
And she also is afraid of anything in a costume.
Pretty much sums up the "disney" experience :).

Anyway, Jon took Little M to some attractions while I went to go fetch my (forgotten) glasses from the van. I had the babies with me. When I got to the front gate, I realized that Jon still had my ticket, which meant walking ALLLLL the way across the park to fetch it before I could head out to the parking lot. We found Jon & Little M standing in line to say "hi" to Chip & Dale, those little disney chipmunks. Little M said "cheese," Jon took a picture, and voila. We were on our way.

Suddenly, I hear Sweet K talking.

Hug Munks. Peeease. Hug munk. Me. Hug Munk. HUUUUUGSS.

All this while she's squeezing her arms around herself as tight as possible.

She wanted to hug the chipmunks too!!

This was notable for a few reasons.

While her one-word vocabulary has been exploding since summer, we are waiting for her to start stringing two- and three-word combinations together (the next developmental step, typically seen around 18-24 months).

Here she was....

using her WORDS...

using them in PUBLIC....

using them in two and three word combos...

AND showing interest in doing something she DID NOT want to do before this.

My heart was full :).

To make a long story short, she repeated this over and over all the way to the van and back. When we returned to this spot, a staff person let us know that while C&D were still standing there, the line-up was closed. We could come back again tomorrow. Sweet K was disappointed and I was tempted to mow that lady over with my double stroller!! Don't mess with a Mama Bear!!

Well, this is as close as she got to hugging a "munk" that day. Thanks to Grandma & Grandpa, who were also moved by this story and in the park with us that day, Little M & Sweet K each got a little chipmunk to squeeze :).

A few days later we were able to visit Animal Kingdom.
Little M brought her travel journal and was able to collect a few autographs.

Sweet K wanted to hug Tigger.
But suddenly she wasn't sure it was such a good idea!



Sweet K was okay with Eeyore...



... as long as he didn't get too close!

By the time we found Winnie the Pooh, Sweet K was pretty much finished with
getting close to characters.
Enough was enough for one day.

Jon passed her to me here at the last minute.
You have no idea how NOT IMPRESSED she was that Goofy came
to stand beside her.
She was done. So was I.
No more costume characters for Sweet K that day!!

She is such a good sport about these things though.
When she's had enough, she'll say DONE DONE DONE DONE.
Okey dokey Sweet K.

 Any time Sweet K moves into a new developmental phase, I get so excited! It's quite the journey with her, though I know it could be far more challenging. We are grateful things are going so well. However, it makes these moments even sweeter.

Way to Hug-A-Munk, Sweet K!!