Fighting to Slow Down

October 21, 2017 attachment challenges, developmental delays, Developmental System, discipline, early intervention, Education, Family Stories, feeding/swallowing therapy, IEP, October 2017 Feature - Developmental, oral-motor delays, refusing food, seizures, Sensory Processing Issues, sign language, speech delay, speech therapy 2 Comments

“Wow, you’re really quick!”

It was one of the first thoughts I had about my daughter. We were standing in the provincial civil affairs office. The nanny from the orphanage had just placed her in my arms. I tried to hold her facing me and she spun around to face outward with a speed I’d never seen before. Then she began jumping up and down, while in my arms. She was happy, but there was nothing still about her.

Asking a few questions in that room we were given some vital clues to her previous two and a half years. She was still only drinking formula. They had tried to feed her solid food but she wasn’t interested, they informed us. Yes, her file says epilepsy but she’s only had one or two seizures her whole life and the last one was over six months ago, they said. (Fast forward a few months and we began to understand that either they didn’t tell us the whole truth, or they weren’t paying attention. She was having grand mal seizures about every ten days.) Oh, and they said, “She really likes taking her clothes off.”

As we brought her back to the hotel room and began playing with her and showing her the toys we’d brought she crawled with a speed I’ve never seen before. Other than her physical quickness, we began noticing other things about her. At first she wouldn’t let us hold her when we fed her bottles. It wasn’t what she was used to. She had no idea what to do with the toys. She put them in her mouth or banged them together or threw them. She had little to no attention span except when she was drinking her bottle or confined in our arms or a high chair and then she would intently stare at her hands and move them around, self-stimulating. She was really tiny, just 17 1/2 pounds to be exact, and had very little hair.

That day, not from her file, we knew that she was significantly developmentally delayed. And we knew that our lives had just taken a radical shift from what we had planned. Yet we were convinced God had chosen Elsie Grace to be in our family… we were committed to her. You see, in our plan, we wanted to adopt two little girls with “minor, correctable special needs.” We were living in East Asia as missionaries. Knowing that adopting these little girls meant major transition, we planned to live in the States for a year and then hopefully return to the mission field.

Three months earlier we had adopted Emma. We would call her special needs “major and correctable.” One month after adopting Elsie, Emma had major neurosurgery to detach her spinal cord that was tethered in three places. She still has regular check-ups, but now she is our happy, seven-going-on-seventeen year old.

Elsie’s needs might be called “major and ongoing” and were a big determining factor in keeping us in the States for good. We knew Elsie needed the resources and professionals available in the US.

Seizures were a major concern. The first year we tried three different medications to control them. Nothing can prepare a parent for the trauma of seizures. When will they come? What patterns are we seeing? Will this trigger a seizure? It’s confusing and heartbreaking and unpredictable.

“Wow, she’s really quick.”

Said a frustrated technician. We’d spent the past 45 minutes trying to hold Elsie’s hands down and head still while she carefully placed sticky electrodes to specific locations on Elsie’s head. As soon as we dropped our guard, Elsie grabbed a wire and yanked it off. This was all in preparation for a hospital stay where Elsie had a big rainbow ponytail of wires attached to a computer on the wall. Trying to keep a sensory-seeking three year old with no attention span entertained and untangled was no small feat. This – for days on end – was coupled with praying for a seizure so that doctors would have some evidence as to where and what in her brain was causing them. We actually had to do this twice because after seven days the first time, no seizure came and we were all exhausted. Even though one seizure did occur the second hospital stay, the evidence was less than conclusive.

Surgery was the next recommendation. It was our decision. Second and third opinions actually advised against it. But even though this final medication seemed to be controlling her seizures, it was still only managing the symptoms and not getting to the source of the problem. The surgery attempts to locate the problematic areas of the brain and then render those areas ineffective, disconnecting them, if you will.

So exactly one year after Emma’s surgery, we were back in the same hospital on the same floor. But this time instead of one neurosurgery, Elsie had three. The first placed “the grids.” It was the same kind of rainbow ponytail, but this time the electrodes weren’t mangled into her hair with sticky glue, this time they were beneath her cranium! And the ponytail was much thicker and heavier, no running around the room this time. A second surgery severed the bridge between her right and left hemisphere and the third finally “disconnected” some of her left frontal lobe. We were in the hospital that for 21 days.

In addition to the medical issues we faced, we were also entering and understanding the worlds of early intervention, IEPs, outpatient therapies… and thank the Lord for insurance to cover all of this. One of my distinct memories was walking into Elsie’s three year old preschool class and meeting her speech therapist. She basically asked me to convince her that Elsie was, in fact, three years old. She thought that perhaps the Chinese officials had made some mistake. While I know this does occur in some international adoptions, I’m fairly certain it’s not true in our case. I think I had to explain why I was so certain three times before she believed it.

Life with Elsie is and always has been quite an adventure. Remember the warning about her clothes? It’s true. In various settings she is so quick to take her shirt off, and sometimes all her clothing. She can wiggle her way out of almost anything we put her in. We’ve tried pajamas backwards and sleep sacks inside out and still, some nights our little Houdini can be found lying naked in her bed. She is also quick to destroy things. Board books get ripped apart. Cereal gets dumped on the floor. Earrings and necklaces get yanked off and chewed on. She is quick to put everything in her mouth. It’s partly that she never got to explore toys with her mouth when it was developmentally appropriate and partly meeting a sensory need. So, gone are the days when anything small can be left lying around. This particularly annoys her big sister.

But there are other things she’s quick about too.

Elsie is quick to laugh. She has a sweet smile that daily brightens my life. She is generally a really happy kid. Something is definitely wrong if she is crying or upset. And even though she is still far below her typical developing peers, she is quick to learn new things.

Through God’s grace, our love and attention, and the multitudes of medical professionals and therapists we have seen in the four years since we’ve adopted Elsie, significant developmental progress has taken place.

Food/nutrition… Elsie came to us at two and half years old and she had only drunk formula. We found out she liked Cheerios too and munching on those got us through the 12 hour flight back to the States. For a while she only ate crunchy foods. But after a few months she began to try other things too. Her diet slowly began to increase. She now eats a variety of foods, but still prefers it all to be cut small instead of taking bites. Playing is always a top priority and she’s still very tiny, so calories are important. She needs a lot of convincing to eat, so all meals are very adult directed. Songs and other distraction techniques work like a charm. She can use a fork, but using a spoon, and liking the foods that require a spoon, are yet to be accomplished.

Toys… as I mentioned, Elsie began mouthing, banging and throwing toys. It didn’t matter what it was or what it looked like, that’s what she did. She still explores things with her mouth, but sometimes uses it more like a third hand. As her attention span has slowly improved, so has purposeful play. She can now easily do knob and peg puzzles and is working on simple jigsaws. She loves activity boards with latches and my husband made her an amazing one with latches, beads and moving wheels. She likes to build with blocks and she loves to read books. We still only read board books. She rips pages too easily with the others. Eric Carle, Sandra Boynton and the Spot books are some of her favorites.

Words/communication… At first we would both get so frustrated because I knew she wanted to communicate with us and she just had no grid to do so. She made lots of babbling noises, but nothing like words. We began with sign language and used it at meal times. She learned “more please” rather quickly because she wanted those Cheerios! So we began teaching her other signs as well. She began talking much like others do, just later. I think “ma ma” and “da da” were some of her first spoken words. But so was one of her favorite foods, “aaa caa” (avocado). Now she is making significant progress. She learns signs and retains them and uses them. She’s repeating us often, especially our expressions with lots of emotion. She says, “oh man” and “umbrella” and “hi gaggy” (daddy). She loves repetitive songs, and she can name and say all of her colors.

Helpfulness… Elsie is quite observant. She watches what I do and wants to “hep oo” (help you). Recently I’ve become brave enough to let her try. When I pull carrots out of the refrigerator, she goes to the drawer and gets the peeler. When I’m baking anything she wants to stir and if I’m standing at the stove, she uses signs to say “I want to see.” She also helps us put dishes away. It’s so much easier to let her grab a plastic cutting board than it is my plates that I had shipped back from East Asia! But she’s so willing and I want to encourage her.

With all of Elsie’s quickness I have to constantly be on my toes. Three seconds of inattention can lead to the pulling of either a fire alarm in our hotel or a stranger’s bikini on the beach. It’s exhausting and I live with a fair amount of stress. What seems like a simple and easy task becomes frustratingly complicated or embarrassing because of something Elsie has done or because I’m exerting so much effort to keep something from happening.

So, I pray that Elsie is not the only one making developmental progress… I hope I am too. I am a person who likes control. I like organization. I like a plan and a schedule. I like rules being followed. So, God gave me Elsie. Haha!

Any semblance of order can be destroyed in 30 seconds with this little lady. In those moments, I have two choices: walk in the flesh or walk in the Spirit. My flesh says, “Yell,” “Get angry,” “Be mad the rest of the day,” or “Feel sorry for yourself.” My spirit says, “You have patience and self-control, use them,” and “Unconditionally love at all times.” For the most part, I’m pretty bad at this. I’ve set a pretty good track record of giving into my flesh regularly. But I’m really trying to change that, to do the exact opposite of what my immediate gut reaction would tell me to do.

When Elsie is frustrating me the most, I move toward her. If I can, I pause and hold her close and sing to her or read with her. When I feel like shouting with anger, sometimes instead I will playfully sing “no, no, no-o” and gently guide her to another room. When I feel really overwhelmed and I’m not sure how I’m going to keep making it through, I stop and shed a tear, and then remember that I have the power of the Living God in my heart and with His strength, I can continue to move forward with love.

I’m learning how to be quick too. Quick to love, quick to forgive, and to remember that I must stop trying to control everything… and instead enjoy my sweet little girls.

Jesus, who loves me and died for me, is in control and these little girls are growing up all too quickly.

For more of our story and to see more pictures, feel free to visit Growing in My Heart. That’s where I used to blog.

– guest post by Erika: email || blog

2 responses to “Fighting to Slow Down”

  1. Erica Furey says:

    Such great reminders! The flesh/choice part of your story is so relatable to moms!

  2. Sherry Hughbanks says:

    What a beautiful testament to your whole family. Your mom is a good friend of mine and has told me of Elsie’s progress. God bless you and your family.

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