Dreamseekers and Company

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.

Daniel’s first independent steps came yesterday morning. Brian made him a pvc walker the night before to try out. He stayed up on his feet for around 15 minutes, which is a long time for him and finished by wanting to get in Jordan’s bed tent… pushing his basket of toys in front of him! We’re so proud of him.

I recorded this as facebook live – this was my caption on facebook:
“Daniel WALKING!!!!!
Take THAT, non-bendy legs. Take THAT, boy in a crib for 4 1/2 years. Take THAT, spirit of fear. Take it and choke on it!
It isn’t ideal by therapy standards, but it isn’t bad at all! I’m thrilled with this contraption. I’m so proud of my husband who managed this in the midst of being overworked. I’m enamored with this tiny boy with the brave heart!”

With a nod to a friend of mine whose impressive list has inspired me… here I have listed significant things that I’ve accomplished or survived during the last 12 months.

Did a bake sale and henna table at a festival as an adoption fundraiser

Watched a solar eclipse

Canned peaches and salsa

Bought and sold a full size passenger van… then bought a new minivan

Completed a homeschool year for children in Kindergarten, 2nd and 5th grades including a daughter in ballet (twice weekly and a large recital)

Passed court and adopted a son! Passed court a second time in the United States and readopted him a few months later! (strange, but true)

Flew to Bulgaria, hugged my son’s Bulgarian mom as she cried, struggled through exit requirements for two weeks while keeping a tiny body alive, flew home (over 24 hours traveling) and stayed in the hospital for a third week.

Navigated insurance and disability programs to get a car harness for Jordan and a wheelchair for Daniel

Navigated a myriad of medical and therapeutic and surgical appointments with my new son, helped him through a double surgery, and developed a treatment plan.

Learned how to use two types of feeding tubes, how to puree table foods to fit through them, how to calculate (in depth) his food’s nutritional content, how to avoid constipation in a body with low muscle strength, and supplied my kitchen with all of the neccessary stuff.

Helped Jordan through the appointments required for minor surgery (new ear tubes) and changed Daniel’s ng tube in the waiting room to the stares of everybody else there. (a memory that makes me feel badass.) < -- I tried to find a synonym for badass that doesn't refer to the donkey's unfortunate archaic name, but there just wasn't any other word that worked.

Hired, lost, hired, lost, hired, lost, hired, lost, hired, lost and rehired a housekeeper for help every other week. (With thanks to my brother for the gift that got me started – it really has helped.)

Was reported to CPS by (formerly) trusted people in my life, subsequently had the case dismissed as unfounded, but developed PTSD as a result.

Hired a counselor for weekly support for one of my daughters for several months

Did all kinds of dentist and well appointments for the kids and myself

Broke my toe and lost the ability to exercise for about 6 months

Completed two post placement reports for Daniel (two down, two to go!)

Went to multiple psychiatric appointments with Jordan and worked through different medication trials to treat severe irritability and anxiety. Finally found a lot of relief following protocol for treating PANDAS (an autoimmune disorder).

Made it to 13 years of being married with the best man I’ve ever met.

Discovered hot yoga (heated room hatha style yoga) and began walking again!

Interviewed respite providers and finally hired a respite provider who helps with Jordan twice a week for eight hours!

Completed assessments and testing (multiple appointments!) and lots of paperwork until I finally got both Jordan and Daniel eligibile to recieve services through DDA (Developmental Disability Administration).

Did fun summer stuff like entering stuff in the fair, going to the fair, taking the girls to a day camp for a week, introducing Anna to her middle school youth group including an overnight camp, playing in the pool, having the cousin’s over for a big birthday bash, and playing in the river and the nearby lake.

Prepared a curriculum for the new school year

Did the regular housekeeping, cooking, grocery shopping, yardwork and blah blah blah.

Released expectations of: canning, cleaning, yardwork, planning ahead, organizing (except when it helps me function), attending functions, signing up for events and activities. I discovered which friends stuck close and which ones were absent.

I HIRED A COUNSELOR.

It’s been an epic year and I’m proud of myself.

My personal goals right now off the top of my head:
Increase personal health (physical strength, emotional and mental stability, peace/joy/satisfaction)
Be steadfast with providing both love and care to my children (including the special physical and emotional needs of my children)
Nurture the most important relationship in my life – the one with my husband

Wish list goals:
Deepen relationships with friends
Reconnect with my community in general

Well, it looks like we’ve had some good times! 🙂 We have indeed!

Hello to myself! And to anybody else still reading this corner of the universe.

I have used this forum for years to explore matters close to my heart, to put words to my life and try to understand it better. Sometimes I celebrate success here and sometimes I report on suffering or defeat. It’s just a “what I’ve got is what you get” kind of place and it’s been therapeutic for me. I feel a quiet, but significant amount of obligation to share our experiences as an adoptive and special needs family with my community as well. For those unfamiliar, I hope it makes our family feel more “normal” and for those walking the road alongside me, I hope it makes you feel less alone.

But I haven’t been writing much these last few months, because there’s a lot of turmoil in my heart. How can I write about any thread of consciousness when all the threads are tangled in a hopeless mess? The good is all tangled with the bad and my thoughts are a mother-of-all snarls.

So I haven’t written much except for sharing photos. Today, hopefully that will change and I’ll begin to share more from my heart. Here goes:

I have had bitterness and anger issues for a long time… it’s an issue tied up with the people in the Christian church especially, but one that has bled over into all kinds of relational areas. It’s a struggle and a wound that is tied up with names like rejection and and betrayal and unimportance and loneliness… and bitterness and anger are their fruit.

So I hired a counselor. And we have found the edges of this snarl and are beginning the painful and difficult process of removing the “infection” and healing the wounds. (My choice of words)

I’m bearing the wounds also of my choices in family life. I am loving and raising two broken-hearted boys and wrapping them in close to my heart. I bear the marks of their lashing-out from fear and hurt and anger themselves (for wounds remarkably much like my own – rejection, betrayal, unimportance, loneliness!). Does that make sense, that I bear wounds from this?

Example: Daniel sometimes wakes up and his first conscious thoughts drive him to panic and scream and physically thrash and bite and scratch… himself if I’m not there or me as I run to his aid. Something like waking up hungry… or sore… or without a preferred toy… or after a dream… or to a sound that reminds him of an old memory… it sends his body immediately into fight or flight mode – panicking and hurting on the inside. It’s heart-breaking to hold him. It’s painful (inside more than outside) to catch the blows. And his trauma becomes mine and we walk it together.

This is something I will work with the counselor about… but not yet since I’m busy with that bitterness stuff.

I’m working through the muddle of my physical weakness… the years of being hypervigilant and knowing always where my children are, what they’re doing, how they’re feeling, their health, their food, their safety – it’s taken a toll on my body. Now, it’s not begrudged and I don’t mind the whole aging thing much yet, but it can be hard. The weight gain… the depression and anxiety… the occasional (1-2x/month) mental breakdowns. I didn’t struggle with just a few years ago. My reserves are simply spent and it takes smaller stressors to send me into a nosedive that is largely of physical cause. I do a pretty good job of keeping my mind in the right place and my actions appropriate… but when I call upon those natural responses of increased adrenaline to get through a fast-paced or panicked situation, I find that I come up dry. Or if a situation is highly emotional or earnest or tragic, my body begins producing those necessary physical chemicals that help regulate thoughts and emotions in those situations… I dunno, noepinephrine, dopamine, seratonin, what have you. But it’s like they’re out, because I overindulged through some difficult years. Sometimes it results in crankiness, anger, tears or shakiness. I sometimes have difficulty prioritizing tasks or thinking clearly. This is not me complaining… more like itemizing and measuring so that I can see improvement with appropriate self care.

Self care… for me that is time alone in my bedroom. Choosing simple meals to prepare for the family. It is going on walks or to a yoga class. It’s finding a project that excites and pleases me… and which can also be completed in a short amount of time. It’s buying a favorite snack and putting some of it in the car so that I don’t run out of food when I’m running errands and can’t stop. It’s putting water bottles in the car for myself too. It’s preparing hearty vegan lunches for myself that I can freeze… because those meals make me feel my best and if I don’t have a meal that is easy to prepare, I may miss lunch entirely. Self care is taking a shower even though it makes something else late. Self care is leaning on my husband, sometimes too much, so that I can go on that walk or run that errand completely alone. Self care is counseling so that I can heal from old hurts in my life so I can focus on the here and now. Sometimes self care is cookie dough.

And all this difficulty is thorougly mixed with successes. Daniel’s sweet spirit and the days of his acceptance and joy and “rightness” where fear takes a back seat. Jordan’s first-time-ever respite provider who is enabling me to engage better with the girls and leave the house a little more easily. My incredible husband who is whole-hearted in his devotion to his family and wife. Watching Daniel experience firsts. Planning and experiencing fun activities as a family. Watching the girls grow and have a suntanned, waterlogged summer. Seeing Anna lose molar teeth and have huge growth spurts. It’s a full, beautiful life. And I’m living it with large wounds – some fresh and some old and some mostly healed and others with infection. Some days I live with freedom and some days I drag.

This is where I’m at. I’m awesome and I’m strong. But I’m doing hard work. And my awesomeness and strength flag. I feel important. I am all in. My dad (and many dads for generations, I think) has commented that if it’s hard work, it’s probably worth doing. Hmm – I can’t remember what he said exactly, but I know it made my work as a mom, wife, sister, neighbor, and friend feel worth every effort.

I think that’s it for now. I’d like to type a development update for Jordan and Daniel and the girls too. I’m proud of my children. I’m not sure how long it will be before I write again – right now I feel drained of all clear thoughts. But maybe I unplugged my thoughts and more will come flooding now. Time will tell. Please keep praying for us!