Worth It

October 25, 2017 ADHD, cl/cp, cognitive delay, Craniofacial, developmental delays, Developmental System, early intervention, Education, Family Stories, feeding challenges, October 2017 Feature - Developmental, oral-motor delays, Sensory Processing Issues, speech delay 0 Comments

Three years after coming home with our older daughter – whose special needs are unrepaired cleft palate and ear atresia and microtia – we were ready to adopt again. We were open to many things on the medical needs checklist, but not developmental delays. We had good insurance and several medical facilities nearby, so we felt most medical needs could be handled.

We soon were matched with a 12 month old baby girl with a repaired bilateral cleft lip and unrepaired cleft palate. We headed back to China confident that we were seasoned pros. We were concerned about attachment and bonding and, of course, speech and language delays, as well as dental issues, but we had made it easily through our first adoption and had no doubts.

We met Kylie and, although considerably smaller than expected, she was a doll. She didn’t fuss and her older sister was over the moon excited to meet her. Then we put a Gerber Puff in her mouth (That’s just what you do when you meet the new child, right?) and I quickly dug it back out of her mouth as she choked and gagged on it. That hadn’t happened with our older daughter.

The rest of the trip became a bit of a science experiment.
What can she eat?
What will she eat?
What temperature does she want her formula today?
How can we get her to sleep this time?
What doesn’t she want to touch now?

Without knowing it, we were on the verge of a crash course on sensory processing disorder.

I still wasn’t worried. With a little Early Intervention and support in speech and language we’d be cruising right along. Until it slowly became apparent we weren’t. After her cleft palate repair and months of intense speech and language, there was still little to no progress.

Our speech therapist referred us to occupational and physical therapies because Kylie was never able to focus during therapy sessions and never stayed still, yet she wasn’t walking or crawling either. Everything happened at her own pace and only after walking did she learn to crawl. Other milestones seemed so far away.

Other families we traveled with were posting pictures of all the amazing things their kids were doing as they entered toddlerhood and preschool, but Kylie was still very much a baby… a very hyper baby.

We couldn’t get into a routine. What worked one day for her didn’t work the next. We never slept through a night. I worried that I had made a horrible mistake and that I had irreparably changed our lives forever. I left my career to focus on her. While I insisted to everyone that everything would be fine, I often doubted that myself.

We added a developmental pediatrician and a psychologist to our appointment calendar. And then a geneticist and a neuropsychologist. There were no definitive diagnoses, no explanations. She wasn’t learning anything at anywhere near a typical rate.

I got tired of hearing others ask, “When will she catch up?” I researched and searched and reached out to others in similar situations. We switched preschools and speech therapists and occupational therapists always seeking the best. It was exhausting.

And then it began to get easier. We found a life-changing pediatric naturopath who prescribed medications and supplements that finally allowed Kylie to calm her body and to sleep. We did eventually find the “best” teachers, therapists, and doctors. We learned not to mess with her sleep schedule and to not make her wear denim or buttons.

She grew and matured and we began to have a life again.

We now have diagnoses of intellectual disability, ADHD, sensory processing disorder, severe mixed expressive and receptive language delay, severe articulation delay, and a moderate oral motor deficit. She can’t read or consistently count even to 10, but that’s not how we describe our daughter to others.

Instead, Kylie is an 8 year old who is always joyful and enthusiastic about trying new things, loves adventure and action, loves her friends and family, and has an incredible sense of humor and imagination. She is sassy and spicy, gives love and snuggles freely, adores her older sister, thrives in school, and is generally just an all-around amazing kid.

Did we irrevocably change our lives?

Yes, in the best way possible. I am a better person and mother than I was before Kylie came into our lives. I don’t look sideways at the kid throwing a fit in the grocery store, I celebrate the little things, and I appreciate what we do have.

I’ve developed new friendships and connections too, people who have my back (and Kylie’s). I am grateful every day that no one knew the extent of her delays and that they were never included in her file, or she wouldn’t be ours.

Every single minute of worry, struggle, and challenges is completely worth it.

– guest post by Andrea

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