Our desire to grow our family started with us filling out a very open MCC list. As we reviewed the files of a couple of precious kiddos, we were able to learn more about ourselves and how we could best meet the needs of a child we were to parent. Having an actual child’s file with real needs was able to push our thinking beyond what filling out a check box and reading a summary of medical conditions was able to do. We were able to visualize how our gifts, strengths, and challenges fit with a particular need and how our daily lives would need to be modified to accommodate a child so the child could thrive. This introspective process caused us to do some MCC updates! We removed several conditions and added others!
Harrison, currently 33 months old at the time, had a medical file listing conclusions and suggestions as a child with delayed motion, language and intelligence development, developmental delay of brain (or some places indicated poor brain development). What did that even mean? That sounds so scary? Where do you start on evaluating his needs? We took a deep breath and began to focus less on the diagnosis and more on the available information and on his physical condition and needs.
We utilized the International Adoption Clinic at Cincinnati Children’s hospital to evaluate medical files. We found using professionals in adoption medicine that have access to experts in all types of medical specialties to be invaluable in navigation and assessment of a child’s medical needs. There were some inconsistencies in his file and the findings. The file indicated he was premature; however he was over 8 pounds at birth. The file indicated he had just learned to walk; yet, the doctors reviewing indicated the child in the video was much more adept and confident with his walking skills than a child that had only learned a month or so.
His file evaluation of motor skills, adaptability, and language and social skills showed some delays but were very encouraging.
The most difficult part of adopting a child with a known medical condition is the Internet! (And the uncertainty of really any “knowns”). Until we had Harrison in our arms and our sight for our own observations and had his physical evaluations with medical professionals; our minds would go wild with the “what ifs” and “if thens”. I spent so many nights, before our travel, developing my own internet based treatment plans for my sweet boy. A “googling” parent is a dangerous thing. I have found that the unknowns are much more difficult for me than the “knowns”.
What we did to address his medical needs:
We worked with the International Adoption Clinic after the initial evaluation to develop a course of action for once we returned home from China. Prior to travel, I contacted our local pediatrician and a Neurodevelopmental Pediatrician at Duke Medical Center to set up appointments.
Harrison was timid and fearful on Gotcha Day but generally content with snacks and my husband or I carrying him. Immediately, we noticed his core strength was weak and he had difficultly navigating any uneven walking surface (slight incline, crack in the side walk, curb, threshold, etc.). When we bathed him later than day, he noticeably lacked core strength and seemed very frail and weak.
He was falling down very frequently throughout the day. He wasn’t yet able to run, skip, or jump. He was constantly falling down. Everywhere, he was falling down all the time. Was this a gross motor skill deficit or delay, neurological, nutritional deficit, what was going on? However, every day he was stronger and acquiring new skills, every minute of every day.
We adopted our daughter Olivia at the same time (they are 2 months apart in age) so we did have some comparison. However, she was living in a foster family for the last two years and he was living in the orphanage. She was noticeable stronger and more confident as well as much more vocal and verbal. We knew she was speaking Mandarin; but, we didn’t know exactly what she was saying! According to his file, Harrison only spoke a word or two in Mandarin. Were these delays due to institutional living, were they deficits due to “poor brain development”, intelligence? We didn’t know. We tried to not compare the two and let them develop and grow as individuals in their own time. That is definitely easier said than done.
Harrison was stronger and more confident with each passing day. His language began increasing quite literally day one in China. He was repeating words, approximating syllables. He was running within a few weeks and within a month this timid, fearful child was jumping! And so happy to be jumping! This accomplishment may have been one of the times I have seen him the most proud of himself. He is still thrilled to have others watch him jump! Jump Harrison Jump!
Neurodevelopmental evaluations lead to no immediate concerns. He is inquisitive, bright, learns easily and is curious about the world around him. He is very typical in his cognitive development and skill acquisition. His gross motor skills and fine motor skills had caught up significantly and drastically in our few months as a family. As suspected, we should evaluate his speech. A Mandarin interpreter was brought in to assist in the evaluation conducted at Duke Medical Center (six months home from China). The evaluation determined he was acquiring the English language and had only two sounds that exist in Mandarin and English that he should have mastered but had not. His receptive language skills were very strong. Speech Therapy was not recommended at that time. The recommendation was to re-evaluate after 12 months. We are currently approaching that. He may need some therapy to assist with his pronunciation of some sounds. He is saying multiple word phrases and is attempting syllable approximation with words and phrases. I understand probably 90% of what he tells us. If you know him well you probably can interpret 60% or so of what he talking about. Harrison LOVES to talk. He gets lots of practice with the “talkers” at our house!
He loves to SING even more! He doesn’t sing particularly on key. But, neither do I really. He sounds beautiful to me and makes everyone around him happy! A good day always includes singing and a dance party.
This sounds so simple and easy as I review my writing. The truth is there were many appointments over many months. We have also been referred to a Pediatric Geneticist to have some precautionary testing; however, this is a 12-18 month wait for an appointment. We are still waiting.
The “good and the bad’ of having a somewhat ambiguous diagnosis is trying to prepare and educate yourself on the possibilities. It’s good to have somewhere to start; but the name or characteristics of a condition are just that. It’s not the whole of your child. It’s the problem, not the possibility.
Every child is more than a few words on a page describing a condition.
Harrison has gone from a timed, shy, fearful, frail child to a giggly affectionate little boy who loves life and is rambunctious and feisty. He is playful and loving and can’t get enough hugs and kisses from mom! This took time. Early on he didn’t really know how to show affection. He has definitely decided that hugs, kisses, and snuggles are the way to go and if he could stay physically attached to mom twenty-four hours a day he would do just that! I have been so thankful for this bonding. However, when you are bonding with another child adopted at the same time and actually need to shower once in while (which Harrison also just decides he will shower with me if given the choice); this level of attachment can be challenging. I have learned to wash my hair with one hand and hold him with the other. This little lovebug has a lot of time to make up for and I don’t want him to miss any more minutes of feeling the affection of someone who loves him I will take that kind of challenge any day!
I would encourage another family considering a child with poor brain development or delayed development to:
- Understand yourself, your spouse, and your family’s strengths, goals, capabilities and limitations (physical, emotional, financial, proximity to resources, etc.).
- Enlist the opinions of professionals in the field that can assist you with understanding the medical facts and developmental conditions of the child you are considering.
- Understand the highest level of support that may be necessary given the information you are provided.
- Determine if that level of support for the most conservative development outcome is in line with your family’s attributes and abilities.
- Imagine the child’s possibilities.
- Celebrate the successes. The little ones, the big ones. Every milestone is important!
Were we just extremely fortunate or lucky? Perhaps. People are constantly shocked that either of our adopted children were in a special needs or medical category.
We are definitely blessed. We did prepare for the problems that could exist…but we focused more on Harrison’s possibilities.
Happy 4th Birthday Harrison!