Daniel – 1 Year Home!

How has it been a year!??

Let me think…. development and changes.
Physical
Medical
Language
Skills
Academic
Social
Emotional
Attachment/Bonding

PSA: This long post was written over the course of a couple hours in a single sitting… while assigning homework and checking finished homework for three girls and monitoring and helping two boys in various states of frustration. It isn’t polished and I am not working on it more.

Let’s start with physical, because as complex as our bodies are, it sometimes seems far simpler than the heart and mind of a hurt child. And though Daniel was cared for (and even loved) for his first four and a half years… his whole life was severely affected by the constraints and injustices of institutional care.

Physical:
Arthrogryposis

Daniel has multiple joint contractures of unknown cause. A large percentage of people affected by arthrogryposis don’t have a known cause, so this is something we have become okay with. Joint contractures are mostly a static condition, excepting when bodies grow and a corrected joint might relapse. Daniel has a club foot, a vertical talus, contractures of both knees (straight), unknown effect in his hips, contractures in his hands, shoulders… a small amount of webbing in his neck, some limitations in the movement of his spine and muscle weakness in his core and throughout his body. The only part of his AMC (abbreviation for arthrogryposis multiplex congenita) that we expect to be treating are his hips on down… but starting with his feet and knees. We are exploring different doctors and treatment options and expect to do a round of treatments in 2019. Treatment includes multiple sets of casts and multiple surgeries with significant, extended discomfort and pain as a norm. I’m not looking forward to it, or to future relapses, but Daniel is interested in being mobile, so it is considered to be worth pursuing. I am purchasing what I need to make castings of his feet so that I can have a cute reminder of his sweet, crooked “baby” feet.

Noonan Syndrome

While searching for the cause of Daniel’s AMC, we employed a geneticist at the children’s hospital. After about eight months of appointments and blood tests and insurance haggling (managed to only do one actual blood draw and had them freeze extra so we didn’t have to keep poking holes in Daniel) – we were able to run what’s called a whole genome sequencing test, which maps out his DNA and puts that information into a huge database where they tell us if any of the anomolies found match up with any known medical disorders. Well, we found out Daniel has something called Noonan Syndrome, which explains Daniel’s facial features, his shortness and clued us in that we need to keep an eye on both his heart and his kidneys as well as be careful of bleeding during surgeries. Good thing we looked! The geneticists say that he is classic in appearance for NS, more severe than most they’ve seen and that they missed it because they were so focused on his arthrogryposis. People with NS are more likely to have orthopedic issues, but so many joint contractures is not at all the norm for people with Noonan Syndrome. Also – if you’re tempted to call people with NS “noonies” as is so easy to roll off the tongue – I’ve discovered it has more negative connotations than positive, so hold it in. It’s like calling people with Down Syndrome “downies.” Any person is rather a person than a diagnosis. Daniel is Daniel, not “a noonie.” See, even we parents of kids with diagnoses have to learn how to be sensitive to our own selves! Experience breeds awareness. Daniel has an echocardiogram and a kidney ultrasound scheduled for next month.

Eyes – look good. Hearing – looks good. Other bodily functions – seem to be working as expected.

Stats at adoption: Comfortable in 18-24 month size clothes, size 3 diaper, 19 pounds
Stats today: Looks good in 3T clothes, stretching his size 5 diaper, 28 pounds!

Wheelchair

Daniel has a manual wheelchair with a 10″ wide/deep seat! It’s tiny. He handles it very well – it is intuitive for him, so that’s great. Things that he is still learning: going downhill, pushing over bumps (small things like doorways even). He uses his wheelchair when we’re out and about, but doesn’t like it at home… he prefers to be on the floor and scoot around at home. I don’t blame him – he can’t reach the floor from his chair and our house is too messy to get around easily in a chair. He has a 2 foot long stick with hooks on the end that he carries around when he’s in his chair to help him reach things. While steering and navigating with a chair are easy for him, I wouldn’t say that learning to “live” in a chair has been easy to master.

Walking and moving

Daniel continues to show interest in walking, though never for a long period of time (more than a few minutes) and he is still lacking in strength to pull his legs forward easily. We made him a PVC walker and he’ll play with it sometimes, but not often. He’s more likely to ask to stand up beside the bed and walk around it – motivated by a desire to see and reach things higher up. He can sometimes get onto a raised surface on his own… for example, if I help him stand up, he can sometimes climb onto a lower couch or bed! He pulls his chest onto the surface and then rolls over until he’s laying on it… then sits up!

Eating/feeding tube

Daniel continues to eat a pureed diet through his feeding tube. He has food preferences and “burps” his food intentionally into his mouth and then swallows it again. We aren’t sure if this is progress, but sort of? When we push him to take a taste (just a drop) of the same food with a spoon, he yells, “wash it! wash it!” and rubs it out immediately and is unhappy. He’s been demanding food more often than he can eat lately (maybe a sign of anxiety about food?) and we’re approaching making some of his snack times spoon-feed only…. but he hasn’t eaten a meal by spoon for a full year and is highly resistant, so that may be ambitious. We’re puzzling it out now that his weight is at a healthy place. It’s not an easy road – either for him or for us – to navigate weaning from a tube when there is so much fear involved. But the tube feeding bit is well and good and we’ve hit our stride with making it sustainable on a practical level.

Okay – Language, skills and academic:

Language

Daniel knows a lot of words. He repeats what we say and he initiates his own speech. He hasn’t developed speech in the patterns that other adopted kids we see have… he’s not picking up on question words, sentence patterns or… I don’t know, it’s hard to qualify. He is a sharp cookie and understands a lot. I can ask him if he wants to taste something with his mouth and he’ll clamp his lips closed and holler, “TUBE!” I can leave him playing in his room and if something isn’t working he may start yelling, “In! In! Plug in!” and will continue screaming, because he wants help sticking something together. When I bring him a meal, he’ll touch it and then demand, “warm!” if it’s cold. He has been intentionally burping up his food, holding it in his mouth and swallowing it (does that go in physical or social?) and has definite food preferences and will throw little tantrums when we bring him food that isn’t his favorite. If we give him two choices, he’s learned that he should identify what he wants. On a social development level – with choices, he has begun asking for one thing (“floor!” meaning, put me on the floor) and then as soon as he’s on the floor demanding for “chair!” This is a normal developmental phase of learning that he has control over his environment and his voice is heard… and learning that we are also able to make choices and set limits… we give him the first thing he asks for, but don’t jump for the switch afterwards! Anyway – speech therapy is in his future, but he is continuing to progress with normal exposure to language here at home still, so we’re putting it off for now.

Skills

Daniel’s play (which is considered a skill when you’re looking at a child’s development) includes make believe and turn taking and sometimes looking at certain books. He will attend to music or Signing time, but he does not watch movies telling a story or initiate regular games. He is focused still on ritualized activities, like making towers, stringing things together and listening to music while rocking. We’re not sure if he’s autistic, but I think it’s likely. Time will tell. I got on a wait list for an autism evaluation, but the wait list was over a year long, so I just kind of put that on the back burner. He loves attention from his sisters and loves being incorporated into his games. I’m a little sad that his language and play development are not following typical patterns, because I didn’t want that to be difficult for him… but we are nonetheless pleased of his progress and proud of him. He makes us proud.

Sensory

I want to pop in here to mention some sensory development. Meaning… sensory integration. He has progressed from being deadly-terrified, screaming for his life of: the toilet flushing, vacuum running, blender running, horns honking and public hand dryers running – to: being nervous (and even scared) and holding his ears but not falling into panic. He is most brave about the vacuum and the toilets at home – not crying at all any more. For tactile and visual stuff, he is no longer wide-eyed and heart racing when he goes outdoors and he will now sit in the grass or the dirt, though he still won’t put his hands in the grass to scoot around on his own. He’ll sit in it and touch cut grass and even hold flowers (which he would not do before!) but, it’s still a work in progress. He’s blossoming!

Academic

He’s not really into any sitting down with a book things yet, but he will let us show him pictures in a book sometimes. He likes to learn names of things and if we practiced it, I think he’d learn his letters and numbers. He knows a few, but doesn’t have much patience for it yet. He loves signing time and knows more signs than me too. When it comes to following directions, he has the compliance of a… 18 month old who doesn’t believe you’re serious yet. Unless he wants to. Soooooo, that’s something he’s practicing!

Social, Emotional and Attachment/bonding:

Okay – this is the one that is the most difficult to communicate. I think.

I bonded to Daniel early on a very protective level and that is going strong. Daniel was very pale and wan in an emotional sense when we adopted him. He was a quiet, determined, scared little survivor. Over this year, he’s learned that he is heard and that he has some choices (control) and that there are boundaries as well. He’s been exposed to a rich world full of relationships, activities, toys and tools, music and environments. His body and mind show the development explosion.

As Daniel has learned that he is heard and important and that he has some control… well, he’s made the sadness and fear of his heart heard more. He’s insecure and that isn’t unexpected. The depth of his feelings is not unexpected either. Neither is his lack of skill in managing or handling his feelings. When he cried as a baby, he wasn’t picked up. When he was hungry, he wasn’t always fed. For that matter, when he was fed or held, it was not guaranteed to be a positive experience.

When a child is feeling deep anxiety, fear or sadness, it does not usually look like those emotions. It usually looks like anger. I personally feel more powerful and safer if I turn those feelings to anger instead. And I’m a mature adult! So he is experiencing a lot of rages, is self harming during rages, is regularly unreasonable or over the top and sometimes will demand item after item after item in a “fit” of anxiety over not having enough. Sometimes these periods are easily tractable into a place of calmness and sometimes it endures more or less all day long. The girls know that sometimes (especially in the mornings lately) they need to avoid Daniel, because he will yell and demand and rage at them just for walking in the room. Daniel has progressed from screaming and self harming (usually hitting his head or scratching his face) to trying to harm us and saying the meanest things he can think of. (“Kick you! Kick you! Bite you!”) This is hard on my heart… to have hate spit at me. But you know what? It’s actually progress. I’ve worked hard to teach him that I am indeed a safe person who will meet his needs. I will sit with him in his hurt. And these cries of hate in honest… are cries of fear and sadness that he was not cared for like he needed when he was younger. I know this… and I’m reaching out to others further down the road to find out what else I can be doing to help him navigate these hard roads so he doesn’t have to stay here. Hope is our journey. Healing is hope. Time to reread the book, The Connected Child. Time to take time for personal counseling and going on brisk walks by myself.

I don’t particularly care to share photos or video of Daniel raging, so I won’t. He struggles. I struggle. Everybody struggles sometime. I only share the details I do to walk beside other families walking these roads.

While on this note of what Daniel’s emotional development looks like in his safe place… that is, at home, it looks quite different with other people. When he’s at the doctor or at church or when company comes to our home, he switches to his “brave mode” which is more smiles and more compliance than he is when he’s feeling safest. It’s counter-intuitive, but an appearance of cheerfulness does not equal actual, deep contentment or happiness. You know how we, as adults, put on a public face and cheerfulness for company sometimes? Well, when Daniel is feeling stressed or potentially threatened (he’s not actually potentially threatened – when things are out of the ordinary, he just worries he may be), then he puts on his brave face, which looks like happy, but which is actually a facade. He is often over-tired and has some stress fall-out behavior after going out or visiting with company, especially friends who don’t set boundaries and do whatever he wants and snuggle him as though they are long-lost friends. (shrugs) It’s a learning process for everybody, but he is not so unstable that we can’t try new things and practice.

So his social, emotional and attachment development are the ones that are most struggling. His physical stuff is a lot, but it is secondary to his heart. His skills are developing mostly without extra effort, as happens with most children. The autism stuff is a little concerning, because it often means he’ll need extra adaptations to develop.

Phew. He’s doing awesome, y’all. He’s a brave little boy with a funny sense of humor and a determined spirit. We love him and he is 100% ours.