Saturday, February 7, 2009

The Hard Stuff

Tonight I just have to vent a bit. We are feeling overwhelmed with the mountain of problems these poor children have. So many issues to address and not knowing how we will pay to fix them (or find the time for all the appointments needed to work on them.... ) I'll just list them off:

1) Olivia seems to have no ability to use her legs. We keep trying to get her stand on us when we hold her but she just buckles and cries. She tips over easily and barley sits up. She is, however, mostly healed from the pneumonia (as far as we can tell ) but we'll do another chest x-ray in a few weeks.

2) Luke has the saddest little legs I've ever seen. One of his knees buckles inward-- we have no idea why and it makes him run in a very awkward way. They are so thin, frail and have no muscle tone. He has almost no toenails. The pediatrician thinks they were eaten by fungus and may/may not ever grow back. We figured out why he is so obsessed with always having socks on. I think he is self-conscious about it (and he has to protect his little toes)

3) Both Luke and Grace have horrible breath and if you look in their mouths, almost half their teeth are brown (I assume they're rotten but honestly, I am terrified of taking them to the dentist to hear what will have to be done.) But I'm not sure how much longer we can take the stench!

4) Grace had a fungus on her scalp while in the orphanage. It looked fine/healthy when we got her but now there is something weird on Henry's head and I'm fearful that the fungus is reappearing in the family. This is a matter of prayer-- please pray that we are not overtaken by a scalp fungus! And if you know anything about this, please write me... I am clueless.

5) As I've tried to work with the kids this week on writing letters/numbers- oh, it has been slow. I know I need to be patient.... very patient. They have never had any kind of education. But how slow they are to learn has been a bit of a disappointment to me. We Americans do so much with our kids. Our toddlers can sort shapes and colors before they walk! These guys can't do that now at age 6 and 8 (or whatever they are, we don't know). Things like using scissors, pulling up stickers off a page; being able to see if something is upside down; holding a pencil; counting plastic teddy bears.... none of that is there. I am really struggling to not be discouraged about this right now. I know I need to remember where they have been (and I don't even really know the answer to that) and that they have been raised in a place so far from my face-paced, 'intelligence-driven' culture and way of raising children. Another thing to pray about : ) I know God need to change me on this point, not them.

6) And lastly, (and I promise this is my last gripe), they are wild! Unless you can strap them to a chair (don't worry, I'm not doing that!) they run through my house and have this high-pitched Ethiopian scream and yell words that are driving me crazy! Luke constantly makes paper airplanes and propels them at us and loves any kind of gun/weapon. They constantly rumage through drawers and closets and I can't find so many things... i.e. where the heck are my orange scissors??? I know it must be because they are bored and aren't sure what to do with themselves but I don't know what to do with them either! I try to get them to sit and color and that lasts about 2 minutes. And you've heard about the 'Sesame Street' fiasco (which by the way has resulted in a constant Ethiopian-accented rendition of the 'Elmo's World' them song. And, they picked up the phrase 'check it out' which they love to scream at inappropriate times). I guess what I'm saying is that I need wisdom and creativity to figure out how to keep them busy, in a good way. There is so little that they can do and I am just out of energy and ideas.

Okay, that is my vent for tonight. Mostly, it a plea for prayer and now you know what to pray for. I know that we are in the worst of so much of this right now. So many unanswered questions, so many insecurities about the future, so much work ahead of us-- it has been daunting. But I know that God has given these children to us-- they are ours. I just need to figure out how to make it through tomorrow : )

26 comments:

CD said...

We will be praying for you, God is in control!
My first thought when you described how they can't do so many school-related type things is to find some pre-k type toys & things to play with...i.e. sand & water box/table, blocks (very big ones & small ones to construct things)...play-doh/clay, lots of "hands on" things that have interesting textures. When they feel these things with their hands, they will have an easier time making associations with shapes & sizes & how things work/how things are made. They would probably also enjoy any type of kitchen activities...mixing eggs & fixing cookies, etc. Even if it doesn't "result" in something edible, just to give them some fun mixing & stirring & discovering textures?

Just some ideas to throw out there!
My prayers are with you!

Unknown said...

I am praying for you and your family during this challenging period of adjustment. I know you've probably heard this from a hundred people by now, but God bless you for taking on this challenge and trusting in His ability to provide for all your needs. Praying for wisdom and patience.

Jamile said...

Oh man, definately will pray tonight. I'm a perfect stranger, but I was sharing with friends about your story today, I can't forget you guys. I pray that God will give you patience and widsom and supply all your needs according to all his riches.

lisa99 said...

Hello! I am a Boundless reader who found your blog through that website. I have been following your story with great interest and love reading your blog updates!

I have no experience in this area myself, but I found a website that gives tips on treating health issues often found in children adopted from Ethiopia. It talks about scalp fungus, dental issues and some of the other concerns in your post. I don't know if you've seen this already, but if not, I hope this is helpful

http://www.orphandoctor.com/medical/regional/ethiopia/index.html

Ame said...

actually ... i got this from someone whose husband was a counselor ... and i don't know if the older ones are too old or not ... but they had one of four that was very strong willed, and they would bring her carseat in the house and strap her in at different times.

i have a special needs daughter, and when she was little i did need to do that sometimes.

another thing that may be of help ... info about sensory integration:

http://en.wikipedia.org/wiki/Sensory_integration

http://en.wikipedia.org/wiki/Sensory_Integration_Dysfunction

http://www.brighttots.com/sensory_integration.html

there is physical therapy for SI (which is one of the issues my daughter has and was in PT for a year when she was 4) ... but there are many things one can do at home.

repetitive physical activity of any kind. some examples:

rocking in a rocking chair (my daughter is 9 and we still keep one her size in the family room)

rocking on a rocking horse (we keep one of these in the family room for her, too)

jumping on a trampoline (years ago i purchased a 40" mini tramp for something like $40 back then (i've even seen them at thrift stores) and i keep it in our family room. my daughter often runs thru the house and jumps as she goes thru.

my daughter rarely walks ... always runs. getting her to walk is WORK. but i've discovered that she is continously learning and listening even when moving. when she was little i read to her even when it seemed like she wasn't listening. i'm continuously amazed at what she picks up when in motion.

swinging is HUGE and we will NEVER be without a swing set. she has an ipod and swings in rhythm to whatever song she is listening to.

music is HUGE ... there is a lot of research on this ... i haven't read this whole article, but it may be a place to start:

http://www.musictherapy.ca/docs/confproc/2002/Jeff%20Hooper%20-Sensory%20Integration.pdf

we've often made our own "obstacle courses" ... such as ... rock in the rocking chair ten times ... jump on the tramp ten times ... run up and down the stairs three times in a row ... jump up and down in place ten times ... clap your hands ten times.

also, intense activity that uses great muscle strength. for example, my daughter loves to open very heavy doors ... or carry very heavy groceries ... or carry very heavy anything. anything that uses great strength or exercise that uses your own strength against yourself (if that makes any sense; i'm not a fitness expert)

"look at me" never worked for my daughter. but telling her "find my face" or "find my eyes" or "find my nose" was a priceless 'find' for me.

sign language (as you may already be using with the language barrier) can sometimes be priceless.

water is a HUGE thing for both my girls, especially my special needs daughter. taking warm baths calms her like nothing else. also playing in water in the sink (though this is very messy). she loves soap and water ... so much so that i NEVER refil the dish soap dispenser to the top b/c she will use it all for play.

just thinking off the top of my head ... sesame street may be too sensory overload for them. that would make most all tv and videos/dvd's too sensory overload for them. i know there are some extremely simple baby videos/dvd's that have extremely little on the screen at one time with extremely simple music ... this may be more effective.

keeping my daughter's environment very quiet with sensory stimulation has been a lot of work, but it's mostly second nature now. still, i will forget sometimes and pay greatly. it's amazing how, for some kiddos, their threshhold for sensory input is so extremely low.

rhythmic; repetitive; strict routine ... usually go a long way ... which has been extremely difficult for me b/c my personality is more artsy-go-with-the-flow.

CB had some great ideas (as she's momma to five little ones). some cautions ... some of these things you may want to begin outside or in a garage-type area b/c of the mess.

some other great tactile type things to play in are shaving cream (which i've done on the shower walls b/c of ease to clean) and peanut butter (which they can eat if not allergic to)

while 'playing' with shaving cream and peanut butter, try using them to draw and write in ... they used this a LOT in PT with my daughter.

oh, and another HUGE love of my kids from PT ... is pinto beans. they had them in a sandbox in PT rather than sand ... we put them in a large closet ... tons of them ... and you know what ... that's where all kids that came to our house ended up ... in the bean closet. i finally got in there one day and laid down in them, and they felt sooo calming! one huge caution ... they do end up getting EVERYWHERE! but the positive part of that was our vacuum did pick them up w/out breaking it.

other sensory things to consider ... what kinds of sounds and how intense and how often did they used to hear and do they hear now ... is there a lot of business on the walls of their living spaces? keep it simple. i've never had stuff on my girls' walls. think of the colors on the walls of their primary living spaces.

(baby with blowout poop - could there possibly be a lactose issue? i keep a little just-turned-three-yr-old boy in my home, and he had these ... i mentioned lactose to his mom ... she took him off dairy, and it ended.)

***

and for you, personally ... don't think more ahead than you have to ... remember ... God gives you just enough manna for today (and often in my life ... 'today' became just enough manna for 'this moment')

psalm 84 sustained me thru some really, really, really tough days/years ...

"5 Blessed are those whose strength is in you,
who have set their hearts on pilgrimage.

6 As they pass through the Valley of Baca,
they make it a place of springs;
the autumn rains also cover it with pools. [b]

7 They go from strength to strength,
till each appears before God in Zion."

Valley of Baca is translated Valley of Tears ... i know you can relate right now.

and often i would say to myself ... almost like a mantra ... 'go from strength to strength ... strength to strength ... strength to strength'

like the manna for the moment ... the strength for this moment ... and trust that when you get to the next moment there will be manna and strength for that one, too.

Ame said...

a few more thoughts:

have their vision and hearing tested by pediatric specialists who have knowledge and experience with special needs kids ... who have some years of experience but are not too old.

we've had simple things like fluid that went away with allergy meds and improved hearing

we have more complex stuff like reading glasses with prism to access a different part of the brain when reading.

there is also vision therapy.

***

and some wisdom from my daughter's SI physical therapist (some of countless wisdom she offered) ... each 'thing' learned and that works is just a piece of the puzzle ... there will not be any one big thing that is THE answer to all their issues ... each thing learned and applied that works is simply one piece of the puzzle of the picture of their lives.

this has helped me tremendously. my daughter has so many various issues with different parts of her body, and it helps me to know that there will never be any one, big thing that will be THE answer. it helps to know, also, that all the little pieces DO matter even though in and of themselves they sometimes seem pointless.

i would recommend keeping medical notebooks for each child. simply get copies of records for each medical visit and put them in a three ring binder ... that easy.

also, make sure all medical specialists send copies of their medical records to your PCP pediatrician. i cannot tell you how helpful this is ... but it must be requested, and you will be required to sign forms for the request (and you will often have to remind them to do so). there have been several times over the years i have either called my daughter's pcp pediatrician or made an appt to see him ... simply to go over the bigger picture of her medical issues. all the specialists focus on their one issue. i often need a bird's-eye-view with experience to help me see the bigger picture, re-evaluate, and look forward.

i even made an appt just for me with a pediatric psychologist to go over all her stuff one time and get his wisdom and advice ... HUGE help.

another thing you may add to your medical notebook is any school-type work they do over time, and date it. that way when you are talking with a specialist, you have samples. you may even include pictures you take of them ... how they can/cannot hold a pencil, for example. you may never need these, but you might.

***

it also helps me to sit back and breathe. sometimes the specialist physicians want to try so much that i personally cannot do it all. so i give us a break for awhile. i need time to personally digest a lot of the info and integrate the info into what i know and experience with my daughter.

in the same medical notebook, you may want to put in monthly calenders on which you make quick notes of things you observe. especially with six children, there will be no way you will be able to remember what and when and where and why. (kinda like going into the dr and them asking when was the beginning of your last period, and you look at them and want to scream, 'i don't know! i've got six kids! when the third child was throwing up!' okay ... i'm digressing)

***

i am guessing that you have family and/or friends and/or church family who are asking what they can do to help.

ask one who is an organization junkie to put together a medical notebook for each of your children and to help you keep them updated.

ask different ones to take one of your children and pray for that one child and research stuff for that one child. then you know you will have one person focusing on each of your six children. as they're focusing on just one child, they may notice things such as diet or anything simple that you simply cannot see b/c you've got a much bigger picture you must keep together each day.

Laura said...

Definitely praying for y'all.

Elizabeth in Wisconsin said...

A friend told me about your blog, and I'm reading it with great fascination and admiration. The days sound long and hard now, but I'll pray for you, and before long, you'll be looking back on these days from a much more comfortable vantage. Hang in there!

From a homeschooling mom of five who is adopting domestically in the near future.

Liln said...

Found you through Boundless.

I can not even begin to understand what your life must be like right now. I can say that I have the utmost respect for you all in having the patience (even when it seems hard) to be able to work with these children.

I've been praying for you and yours since you went to pick up the children (when I first stumbled into Boundless). Continuing to pray for peace, strength, and everything else you need.

God bless!
Liln

A said...

Found you through Boundless also...

Regarding point #5 (education):

A big thing to keep in mind is that you're currently interacting with (Luke & Grace's) oral culture brains, not literate culture brains.

The whole concept of "symbols" to the depth that we don't even notice that we use symbols is probably baffling to them.
-
Imagine not being able to write any thought down (ever) or look up any question you had (ever).
-
Their reality is dictated overwhelmingly through 5-senses interaction, never through consciously symbolic mediums like writing which aid inner thought and mind development.

If Luke & Grace have grown up never being able to use symbols like a literate person, the only way they can preserve thought is through dialogue. Which they can't put to much use because of the language barrier.
This present reality + the nature of kids = headaches for you currently.

They're simply going to be difficult to parent until their brains conceptualize all these "symbols" that pervade literate mind culture.
(*clocks/concept of time will be less understood than their same-age literate counterparts
*the whole point of learning things like letters and numbers is lost on them because they don't have a translatable idea for the use of symbols formed in their head as they've never been educated
*their minds are not structured with the symbols we use in literate culture, so while it doesn't mean they're any less intelligent, it's going to appear like they're awful at behaving compared to their same-age literate counterparts)


Until then, the physical-senses real-time reality they exist in is going to be overwhelming to literate-thinking people.

Kids are really smart and resilient, though. Keep havin' at 'er!

Alison

p.s. maybe see if an Ethiopian can explain to them the whole objective and potential for fun that exists in the world of learning to use symbols. The freedom it opens them up to in terms that they find appealing at their ages. If the concept itself is too foreign to see as fun, try persuading through means that they do currently see as fun.

("One day you're going to take a driver's license test but if you don't know how to read and write you will not be allowed to drive the Suburban!")

Right now it's not at all stimulating to their physical senses, which, again, is mostly their reality.

I recommend reading Walter J. Ong (Orality & Literacy), a late Jesuit priest and English literature prof.

A said...

Oh yeah--and most importantly, prayers and encouragement to keep up the good work!

It will certainly pay off.

We rarely change in a linear manner (effort directly proportional to result) and your family is just in the slow growth stage.

It's like skateboarding. Slloowww growth with lots of bruises and cuts and head-banging frustration. Then all of a sudden you're flying and learning new tricks every day.

Peter and Nancy said...

So many others have posted great ideas, so I'll just ask if your adoption agency has a parent chat room -- ours did, and it has been so helpful as we figured out skin issues, sleep problems, etc.

Wish I lived nearby and could be one of those lifesavers helping with laundry and meals! I'll just keep praying instead.
Hugs,
Nancy

Amy said...

Hey Beth,

I haven't been able to comment before, but I'm trying again. I don't have any words of wisdom or insight. Among the many, many therapies you have in your future, I just want to remind you that speech therapy is offered to school age kids (over age 3)through the school district. They do not have to be attending school to get it. Call that school close to you and see what they say. Your HS days may be filled with much work in the car and waiting rooms as you certainly have many visits and evaluations ahead of you.

I wish I could just come hold the babies and amusing the others while you get some things accomplished. I'm so glad to hear that laundry is included in your church's helps! Awesome!
\Amy

Adopting1Soon said...

You are already making progress although maybe you don't see it. Remember your first pos when the baby couldn't hold his head up? And now look at him!

Fungus, toenails... all simple stuff. Go to the doctor. Get the creams, etc.

The knee.... rickets? That goes away with good education, or can go away.

The baby with no muscle tone, may be because the ET's carry the babies everywhere. What about one of those bouncy seats that hangs in the door? that might help if he starts jumping.

Good luck! I'm so glad to hear your church is providing concrete help!

Dorinda said...

Oh Beth! I am sorry for the hard transition. Thanks for being open about it! Now I really know how to pray. Wish I was closer to help out!

Amy Phelps said...

Wow! Motte and Beth you are loved! I couldn't even get through all these. HOpefully those that have gone before you (Thompsons, Lisa) can give you great encouragement in these various areas. God has brought you through "hotter" fires than this, and will continue to do so. We'll continue to lift you up in prayer, and may God send His help each day, as you need it. Love you guys!

Karen said...

Beth - thank you for your honesty and openness with the joys, sorrows, struggles, blessings, concerns and frustrations you have going on. Know that you are prayed over by so many and loved and cared for. I pray that God gives you some answers to the health concerns that you have as well as the communication and education of Luke & Grace.
Much love to you!

F.L. said...

well! I will try again! I found this through something from focus on the family/ryan dobson it sounds as though you are very much home school oriented but as someone else said the public schools do have a lot for speech therapy etc. here we have something called english as a 2nd language there's NO shame in not being able to do it all yourselves! OR using professionals esp. free services such as the public school system--as was mentioned above--you should not have to send them to school there--at least here home schoolers participate in public school activities quite a bit don't forget to take time for yourself!--even 10 minutes when your husband can be in charge or they are napping etc. could make a huge difference! one more thing have you heard of melaleuca oil--great stuff go to melaleuca.com--it is a business but if it is something that you choose to use you may already know someone that would give it to you at their cost--my Mom could have it mailed directly to you from the company--but with these things I know you cannot exchange that kind of info--was just using it as an example sounds as though you have a GREAT bunch of friends/family/church what a blessing!!!!! Ps. 23 in the new living translation is great!--although it is in any one?!!!

Mom Barba said...

I'm touched by your love for these little ones and keep thinking how the Lord loves us even when our behavior is so much worse than theirs. He can give you wisdom and love them through you!

Amy Jo said...

I'm praying for your family, even as I type. I know that bringing home one new child can be incredibly overwhelming. You have a lot going on! I pray that God will pour out His grace, healing power and peace over your home and your sweet family. May He give you divine wisdom as you settle in as a family. The one thing I have learned is that how I parent my Chinese daughter is often the complete opposite of how I parented my birth children. She had different needs and challenges that required a different approach. It was crazy world for the first year at least. Hang in there and try to make taking care of YOURSELF a top priority.

Chantelle said...

Totally praying for you. Wow, that is just a lot to wrap your head around. I have no idea what you are going through, but I would hope that you give yourself a break. You have started a whole new life with a whole news set of kids to love...And you will have to learn how to best love them.
That is just a time thing.
I will so be thinking of you and please continue to vent...It is good to be honest.
Chantelle

CappuccinosMom said...

Things will get better.

Sounds like it might be time to take a vacation from the expectations for a little while. ;) My husband has been here for 6 years and he's still adjusting to the States. Your little ones will adjust much quicker, but even the youngest are feeling a huge, huge difference between Ethiopia and the States, not to mention now having to adjust to life in a nuclear family.

Give it time. :)

Alison mentioned something very important on the learning front--Ethiopia's learning culture is mostly oral. They're going to have to learn a completely new learning process. The suggestion to start with kindergarten fun stuff is a great one.

On the fungus issue--you might try a good tar-based shampoo.

I wish you all the best! You have my admiration for taking on this many children at once. I'm sure you'll do fine in the end.

mouse said...

First off, I am praying for your family! I found your blog through the Boundless website, of which I have been a longtime fan.

Just some quick encouragement on the "education" and "wildness" fronts. I am not yet a parent (so take this all with a grain of salt) but I have several years of volunteer experience with children who are homeless and/or from disadvantaged backgrounds. My experience for the past few years has been with 3-5 year olds in a preschool setting, but I also have some experience with tutoring 6-10 year olds.

And at the moment, your kids sound just like the kids I'm using to working with. Getting into everything, short attention spans, don't know their colors, numbers, shapes, letters--and English *is* their first language then. The encouraging part is--they do learn. They might tell you for weeks that the green ball is red, and the blue ball is red, and the yellow ball is red...but then there's the day when the green ball is green, and it's just fantastic :)

Young kids also seem to respond *really* well to structure and routine (although I know that is difficult to enforce when you're vastly outnumbered!) Even the most rambunctious kids settle down into the routine over time, and it's easier to enforce the routine when it's always the same. You can always tell them, "You know this is the way it has always been. It was like this yesterday, and last week..." Where I volunteer now, the teachers have a schedule (with pictures) that gets recited every day (we come in, we read a book, we wash our hands, we have breakfast, we have circle time, we go play in our centers, etc.) The schedule is always the same and it's pretty rigid--you can't play with toys when you're supposed to be reading a book, for instance. You might not want something quite that rigid for your home, but it does teach the kids that these are the rules, and the rules are always the same. It also gives them consistency and a framework they can count on. Something reliable.

Reading can also be good, even if the kids don't understand you yet. Reading time can be cuddling/bonding time, and you can point out pictures and describe them, even without reading the story. The kids will pick up vocabulary from you that way. Or you can get your other children to help read to your new ones. Songs and rhyming games can be fun, pointing out objects and putting names on things around the house like "door" or "table". Doing scavenger hunts to find things that are red, or finding the letter "R" or things like that. Blocks and Play-doh are also good for developing tactile/motor skills. Or even tearing up pieces of paper and crumbling them up for art projects helps to develop fine motor skills.

Anyway, my thoughts and my prayers are with you all! God bless.

dt said...

Is the scalp issue a ringworm? They are extremely catchy and hard to get rif of sometimes. Also, try simple things with them like blowing bubbles or build with play dough or modeling clay. For me, I wouldn't push them to do a lot as far as learning until a strong bond has been made with the children. I wish you the best!!0

Jacqueline Smith said...

I stumbled across your blog this morning and was excited to find another family with a large newly adopted sib. group; we adopted a sibling group of 5 gypsy children from Latvian orphanages 1 1/2 yr.'s ago, and also have 2 Kazakh adoptees. Your experiences sound similar to my own. I'd love to correspond. Jacqueline Smith, Griffin, GA www.SmithFamilia.blogspot.com, Jacqueline@homeschooladvantage.us

Patty said...

Hi! This is the first time I've read your blog. I'm sure that since you posted this, you've come up with a LOT of answers. I have just one thought, and no real solution.
I was thinking about the children getting into everything, and the problems that causes. I would guess that they've never had more than a couple of posessions in their lives. They may just be completely overwhelmed with so much stuff. I'm sure it is a lot to take in for them, and it may not really make sense to them - I mean, who could possibly need all this stuff?? :)
They are all so adorable. God give you wisdom and strength! I love seeing what you've done! Blessings!