Monday, August 22, 2011

delays and victories

Dearest Lily,


That's a word I've come to know as your mama, and a term any parent of a child with special needs becomes familiar with not too far into their journey. We expect them, and the longer we're in this thing, we realize that they are going to crop up in one area of development or another. And although it's never an easy thing to watch your child struggle, I think the more I accept that your diagnosis can at times mean significant delays, the easier it is to come to terms with how to address those issues.

There's a fine line between expecting-not-accepting... and also having a healthy view of reality. Because while it is true in so many instances that children with Down syndrome are "more alike than different", reality is that your bonus chromosome will in fact set you a bit apart in some areas of development. I don't think it's fair or realistic to expect you to be on track with your peers in every area; I'm just setting myself up for disappointment if I hold an impossible standard in my effort to prove just how "alike" you are.


So delays are to be expected, and one of the things I've noticed is that it really is impossible to determine where you're going to be developmentally tomorrow, based on what I'm seeing now. Because just when I'm certain that a milestone is light years down the road- bam!- you're proving me wrong. Last week we were working on a four point crawl with you, while "standing" was not even on the horizon in our minds.  And suddenly there you were: pushing yourself up in the middle of the room, proudly planting your feet on the ground with a big grin on your face, as if to say: don't underestimate me, Mama. I've got this covered. 


Which brings me to this latest delayed developmental stage, which honestly, Lily, is one I wouldn't have minded missing altogether. It's something every single one of your brothers and sisters have gone through, and with each one of them it only lasted a month or two: separation anxiety. I've never left my children with babysitters very often in the first year, because of breast-feeding, and also because I honestly just love having my babies with me! I admit it, Lily: I'm addicted to my babies.

Having said that, your siblings have all gone in our church nursery somewhere around three months of age... and with the amount of church we go to, that is a significant amount of time spent away from me. But sooner or later, they have all "hit a wall" around 8 months to a year, when they decided nursery was not the place to be. It was never fun to drop off a crying baby in the nursery, knowing that the first few minutes would be spent in a fit of tears. But realizing they would eventually calm down was always my reassurance to leave them there. Sometimes it took two or three services of letting them "cry it out" and sometimes it took a bit more, but without fail each of them passed through that phase unscathed. They soon learned that Mommy would be back for them, and that playing with the other infants and toys was a better way to pass the time than crying.

Enter Queen Lily.


...who decided 10 months after the age her brothers and sisters typically went through separation anxiety, that she was going to try her hand at it.


Oh Lily- those tears and that face just broke my heart. I tried service after service to let you cry it out...but I never saw a lull in the storm. In times it got a little ugly...


And each time I picked you up at some point during the service, your tiny frame shuttering with sobs and your tear-streaked face red and swollen, I knew instinctively- this wasn't working.


Because all of your siblings have been able to self-sooth at some point. Each one of them seemed to have had a built-in coping mechanism that enabled them to slowly work themselves out of a crying jag, and helped them trust that they were safe without me. But for some reason this ability to cope seemed out of your grasp- not only did we not see progress with each service, you seemed to get worse each time I gingerly handed you over to the nursery worker. In fact, I suspect some of those workers might have cringed a bit when they saw us headed their way. I didn't blame them....


One day I asked your therapist about my theory. I've never been a parent that looks to make allowances for my children...I've always sort of balked at the idea that children are naughty because they missed a nap, or surly because they had too much sugar that day. Granted, there are contributing factors at times, to babies and children and their moods, but for the most part I don't like to make excuses for behavior. So it was with hesitance that I asked Karen about this issue of separation anxiety. Because it seemed to me that you just didn't have the coping skills that your siblings had, and that leaving you to cry was not teaching you to trust your environment or caregivers, but instead was causing the anxiety. For whatever reason, what had worked with your siblings was not working with you, and you started withdrawing whenever we got to church- instead of being your happy, playful self you were clingy and sad, and you weren't even content to go to your daddy or Mackenzie when we were there.

After talking to Karen, who reassured me that you would eventually grow out of this stage, I decided that I needed a different strategy with you than I'd had with your siblings. At first we just boycotted nursery altogether. I wanted church to be a place you felt comfortable going to, a secure environment that you didn't dread. You've always stayed so quiet on my lap, so you weren't the distraction that a typical 19 month old toddler would be. Slowly we started giving you a few minutes in the nursery...if you reached the point where you were inconsolable, the nursery worker would call me, and we would try again the next service.

Each service you seemed to last a little bit longer, until today...your sister-in-law, Naomi, sent me this picture from the nursery....



Naomi said you cried the first fifteen minutes, and then she put you on the rocking horse. You sat and rocked and smiled, and then you got down off of it...only to turn around and climb back on again. You were so impressed with yourself, you spent most of the morning climbing on and off the horse, until the end of the church service. And when I came to pick you up, guess what?! You didn't even cry! You sat calmly on the floor playing with your toys and smiling at me, as if to say: don't underestimate me, Mama. I've got this covered. 


So tonight, sweet Lily, as I tuck your tiny sleeping body safely into bed, and brush back the delicate wisps of golden softness from your eyes, I am thanking God for those delays. Because while they stretch and challenge me as a mama, they also cause me to dig deep within the wells of trust and instinct and faith, making the little victories of life that much sweeter.

Loving you always,

Mama oxox


Education: Exploring Online Learning said...

So I know this is about separation anxiety and all, but I confess in my shallowness, I am SO distracted by those cute black shoes!

Proud of the Lily Bird for being so tough to be in the nursery and for dominating the rocking horse. And agree that you want her to feel safe and happy at church!

Race Bannon said...

I remember when I was young, probably 3, visiting the grade school my sisters attended, and when we drove away, I was sad, I wanted to stay...then my car door opened and I felt a push...


I was watching a show last night where some US soldiers were bringing supplies and medicine to a small Afghan village. The medic was treating the villagers, and then an old man brought in a 3 or 4 year old child. The medic said, "This one's got a little Downs goin' on...just a little."

I thought it was funny.

Mandy said...


I wanted to say, "Good for you!" My six year old daughter had terrible anxiety issues as a toddler. We believe they stemmed from moving frequently (husband was Navy) when she was so little and Mommy being sick and in the hospital. She does not have ds, but suffered terribly from anxiety. We tried the "cry it out" and she also could not cope. We had her evaluated and learned some coping skills, like taking deep breaths together. She was almost 4 years old before she went without us or her brother to nursery or class. Today, she is excited to go and I'm glad I didn't listen to all the other people who insisted I was stunting her by catering to her need for security. God knew and I knew what she needed. He made our kids to need us and that's a good thing, not a bad one. Her older brother cried it out successfully and never looked back, but each child needs us differently. Lily is beautiful and wonderfully made as always. Much love!


Heidi Ehle said...

I completely understand what you are going through. Liddy had separation anxiety from the start, even when we were in the room where she could see us. I worried and worried that she would never fully be a part of our family because she would never let anyone hold her. But just when I started to feel sorry for us, it all changed.
Unfortunately, OHS has set us back quite a bit in this area.....She's back to crying hysterically every time someone tries to hold her. But this time I realise that it will pass. It just might take us a while longer.
Much love to you all!

D said...

Good job Lily!

It is worth the effort have her feel safe and happy at church! We work very hard with our children to make them happy at church too. We want them to want to go to church.

Separation anxiety is so much harder on us parents, isn't it?

Lori said...

I have been meaning to ask you how things were going with nursery - so glad things are swinging in the other direction - yeah for Rocking Horses!!

cathy said...


Trust your instincts, my dear friend


Anonymous said...

I love the picture of Lily on the horse! What a victory!! My daughter, who is two and a half, cries when we pick her up at the nursery at church. She is having so much fun she doesn't want to leave!!!

Ginger said...

Our Julia kept bringing sickness home from the church nursery, so we decided to try out having her with her other siblings and us in the worship service. Three weeks have gone by and she's done great. She just loves being with all of us and we love having her. AND we're all staying well! What a concept!

Kaetlyn and Grace said...

What a wonderful post. So pleased to see that bright Lily smile at the end. Kaetlyn has started her own clingy/separation anxiety phase...going to use your advice and try a little at a time. Big hugs to you and Lily! :)

Becky said...

Lily will keep surprising you on how much she has covered. Yes, the delays are there and come. But, they keep on progressing at their own pace and meet their goals...every time. I expect a lot of my daughter, and I have often been told I am setting myself up for heartbreak later. Maybe...but as long as I accept what she does and keep expecting and loving her for exactly what her best is...I do not think so. I am glad to see Lily smile at the end. Being away from mom is a tough matter what the age! :)

Wendy said...

Yay Lily!

Me ;-) said...

Great post. She looks beautiful in her pink dress. I think I had more separation anxiety than my daughter did. LOL!

Lacey said...

Oh that sad face would just kill me! Arina is getting better, but once she realized who mom and dad were, she didn't want anyone else!

cara said...

I use to leave my kiddos and allow them to cry it out. Can't do it now with my little ones at all. Somewhere I changed as a mommy, and my heart broke for them. I more I have, the more soft I become for some strange reason in this area. But I do not blame you a bit for not wanting to leave Lily. You do have to trust what God has given you. I have never left Benji yet. He just now seems to show some of this anxiety with new people and wants me. It is all so interesting. He is also showing it much later than his siblings did.

Lily is beautiful- LOVE these pics.

April Vernon said...

This post was really helpful for me. Levi is also entering his separation anxiety stage. He does fine in Bible class and worship but doesn't want to be left with a grandparent or anyone else even for a few hours. I like the idea of just a few minutes at a time and working up to a longer time frame. Thanks for the idea!

Ilisa Ailts said...

oh my gosh, this is my kids - all of them. I cannot let them cry. Calvin still does not go to sleep on his own. His brothers did, but they also transitioned from breast to a paci but C doesn't. I know, people are often quick to scold me on this - but I just can't not yet. Maybe I need to think about it like this - just a little longer each time?

Evan was horrible at separating, and Nolan is not as bad but not easy is hard on us moms!

Stephanie said...

Thanks for this post. I am experiencing this exact same thing with Ellis Anne who also has DS...she is almost 3. Separation anxiety has changed the way we have to work through our daily lives. Ellis Anne is so happy and content at home, BUT.....she does not cope very well when she is left at nursery. We don't seem to be getting any's hard to do. We have tried staying home and yes, that does work, but we can't do that forever. Right now, we are trying leaving her for 10 minutes or so and then are upping our time (like you talked about in your post). We just started this, so I am praying this will help our little Ellis Anne.

Way to go Lily!!!

Stephanie Lynch