Monday, May 28, 2012

Random pictures from the last few weeks…


This gentle giant’s name was Shaman, and Wesley rode him (being held by Michael, also riding) using a bareback saddle.  As you can see, they understood each other Smile  Shaman had to be put down last week, but these pictures are an awesome representation of how a 3rd place Kentucky Derby winner and a little 7 yr old former-orphan boy who has quadriplegic CP can share a sweet, sweet bond!





Sunday, May 27, 2012

It's been a busy crazy week!

But it's been a lot of fun! And... SCHOOL is OVER!! :) :)  SUMMER is HERE!

Sunday Mike and Kris went to church for a LONG day while Michael was helping teach a class, so the kiddos and I hung at home and enjoyed our first POOL DAY!
We started the school week with a post-op for Wesley's g-tube on Monday and a good bill of health there.
Tuesday was Karate for Kristopher and Brianna.
Wednesday I made one last Sam's trip before summer break!
Thursday was a long day at home catching up on some missed schooling from Wednesday then an evening in the pool for ALL of the kids (and Michael).
Friday was Preschool graduation for James and Micah, a trip out of town to look at tile and carpet for the areas under construction, and in the evening Michael had softball so it was Me+8 for the night our last day of school.  That resulted in a movie rental, popcorn and M&M's for all the kids while I sat on the couch and tried my hardest to make it through since I'd already promised a movie night even though I had a migraine!

And here... are the pictures that I've been SO bad about posting on the blog lately! (Though if you're on FaceBook, I have been uploading there as we go... sorry!)

Sunday's Playday in the Pools!

(Brianna)                                            (James)

 Emma and James having some "time away" from the pools while they worked out their difficulties :)

Micah, looking for trouble!

 Aleksa, letting the water SPLASH her! A big accomplishment there!

And the peanut, Lynae, posing for the camera

This is how Wesley spent the morning, because we didn't have anything for him to use to sit/lay in the kiddie pools :(.  He did enjoy the fan though!

And with that, we figured out how to purchase him a seat that he can (hopefully) use for a long time!  It is a hollow bath seat that the bottom fills with water.  Purchased on for just under $150... it is an expensive little chair, but the JOY in his face when he got to be IN the pool with the kids---
worth EVERY. PENNY.  This is Thursday night in the pool...
(Lynae, Aleksa, Micah, Emma, Brianna, Wesley)

(James, Micah, Lynae, Emma, Wesley)

(James...    ...Micah)

The "contraption" Wesley is in here we bought earlier, but this was his first time in it!  It's called a Head Float and is made for kids like Wes that don't have upper body support.  He LOVED it as you can tell in the second picture.  TOTAL MOVEMENT is allowed when he's in there!  He was flapping and just LAUGHING.  A great workout!  

Big-stuff Kristopher :).  I can see him looking at me the very same way when he's 16 (he's 8 now...)  :)

 One VERY HAPPY little Wesley!

And last, Friday's Preschool Graduation!

(Micah)                                                  (James)

Monday, May 21, 2012

Annikah's brain surgry is tomorrow

I'll back up a second first... This isn't my child :). This is the beautiful Bulgarian princess that Shelley and Robert Bedford adopted in December and I had the privilege of going with Shelley to bring home. This is the child who, upon learning that she had the disease that constricts blood vessels in the brain called Moya Moya, they were told she would need immediate surgery... Then they were told the she didn't necessarily need surgery at all... Then they got a second (and 6th and 7th!) opinion through their neuro surgeon conferencing with a bunch of adult and pediatric surgeons that deal with this condition at all stages of life and... Once again... They re recommended to go ahead and do surgery ASAP so that the risk of stroke or seizure was taken care of. God has already done miracles by allowing Annikah the compensation that her body has done to keep her healthy up to this point, however medical intervention is now recommended and the Bedford family is stepping forward in faith knowing that God is in control and believing tha His will is their heart's desire... To see their beautiful daughter lead a long and healthy life! Please be in prayer for Annikah and for Shelley and Robert along with the 6 siblings that Robert is holding down the fort with for the week. Annikah's first surgery is Tuesday, followed in a month by a second surgery on the other side of the brain.

Tuesday, May 15, 2012

Sorry for leaving you hanging...

Wesley was released from the hospital on Thursday afternoon about 430... Just in time for us to make it back home by 5:40 to drop Wesley off to Michael and pick up the two little girls along with Kristopher so we could go see the girls' end of the year program for their church group. Headed home after that and got everyone in bed then went to sleep for a much needed FULL night of sleep. Only somewhat interrupted by Wesley's needs since Michael got up with him most of the time. Friday seven kids and I headed down for a 40 minute drive to go pick up new glasses that are "unbreakable" flex frames for six of the kids. I was exhausted, Wesley was somewhat sore, but we all survived the trip and we now have everyone's glasses which is a benefit for sure :). That evening we all headed out to Michael's softball game for church league and had the ever so healthy McDonald's dinner at the ball field (our typical Friday night stop in... It just works...). Saturday started with horse therapy, however Wesley sat this one out at home, and I kept the other 4 kids that rode the previous week home with me as well. After lunch I took off for a solo trip to Sam's (last trip I overdid it by pushing a stroller and pulling a very full... Very heavy cart... This time I went alone!). Made it home from that and unloaded the van then we set out with all 8 littles in tow to go to Lowe's and look at bathroom vanities. Ours has some water damage and since the bathroom was torn up and new tile, etc is going in, it makes sense to go ahead and put in a new vanity now rather than waiting and having to make due later with any changes, paint, etc that is done. We found a few that will work but decided against purchasing one just yet (we have some time befor we need it, and are running out of storage space!). We got home in time for a quick and easy dinner, baths, and bedtime for the kids. Sunday started out rough with kids crying before we opened our eyes. I got up at 530 to deal with them and didn't get back to sleep even though the culprit did. At 7 there was another bout, this time fighting, so then I was really up for the day. Another day of struggles getting one specific child to dress and come out of her room with her clothes on properly... and a rushed breakfast which meant I ended up with a pop tart at some point. Then off to church where we were texted to go to different parts of the campus for different kids that couldn't seem to behave that morning. We kept Wesley with us since he was still in recovery mode from surgery, and Aleksa always sits in church with us, so when we got the text about the third child needing us to come, that was when the morning was done in (5 out of 8 weren't handling church well at that point) so it was time to go home. I had written off the idea of that day being Mother's Day well before that point in the morning. I hadn't expected anything wonderful and exciting, but that day turned in to a bad days from the first minute... Worse than a "normal bad Sunday" which for some reason we have on a pretty regular basis. It was just a bad day... Not a bad "Mother's Day". The day continued to plummet, and eventually I snuck away (hmm... Internally?) and went to the river and read a book for an hour, treated myself to a strawberry lemonade, and made my way back home. I had made shepherd's pie for dinner and Michael fed the kids and had started getting them in PJs when I got back. A sweet goodnight to our children and I did my third load of dishes for the day, got things ready for the Monday morning IEP meetings and finally went to bed. Monday got better :). I had a sitter coming early and Mike brought the three boys to school while Wesley and I ran to Publix to pick up muffins to share with the IEP team. We haven't trained any of our sitters on his pump yet and Wesley was still iffy on how he was feeling, so we decided to err on the side of caution and bring him along with me to the meetings. A two hours and twenty minutes later, we had two sets of evaluations for disability labels (ID-intellectual disabilities) for James and Micah along with new IEPs ready for us if we decide to enroll them in public school in the fall. They do know that we ae planning to homeschool the little boys along with the four current homeschoolers, though. As an aside, it was suggested to us that we go ahead and do the disability label testing for the boys simly for the idea that if we want to enroll the boys in the near future, that part is out of the way. In addition, we were counseled to do he testing and keep the results filed so that if any question about our homeschooling was to come up, we would have school based test results which show that our children all have disabilities that reflect a difference in their ability to learn. What I mean by that is that the FIRST responsibility we have is to do right by our children, and by homeschooling we ad doing just that. But second, we have to do right by those implementing the laws which regulate schooling and child protection. We will report to the district annually, and it likely will not reflect the amount of change that they expect to see in a year time for most of our children. Having school based test results a reflecting that the children have disabilities which impact their ability to I progress as a typical child might is beneficial to be able to produce if questioned. Stinks that we have to think that way, but this is a reality here... Especially with multiple disabled children. :). Last night Michael and I moved all the furniture around in our family room, preparing it so that the construction crew can break through the wall to make a new hallway entrance and so that the electrician can get to he things he needs to get to in order to get all the wiring set for everything. That includes moving both our homeschool cabinets (and purchasing and building another since we were already tight on space!), moving the couch, chairs, our big area rug... Might not sound like much but it took about an hour and a half to do it all with both of us working on it (ok, I helped with the building of the new cabinet only by reading directions from a chair... I was done in!). Now it's almost a week since Wesley's surgery and he has slept through the night TWICE (YAY!) and hasn't had anything but a morning dose and an evening dose of pain meds when we clean his incision area. The phenol and Botox are already kicking in and he is able o scratch the top of his head, extend his arms upright, lay RELAXED with his legs on the floor, and other things which are wonderful to see! He's back to his mischievous little self and finding new ways to make trouble, which is great to see :). His new corner chair (a Kaye product we purchased from Amazon for him) is working great, and he is receiving sits tube feelings primarily while playing in that chair. He's coming to the kitchen when we eat as a family and having part of whatever we are eating... However much he can handle without any pushing or fighting for him to eat. That is AWESOME. This morning we offered him a Pediasure prepped like he was receiving last week and I *thought* he was going to be excited about drinking by mouth (so far it's been mostly food and meds, with some liquids use to wash things down) but to my surprise, he drank about 3 oz and didn't want the rest... And that was after not eating all night. I am thankful for the feeding tube, and I'm pretty sure he is as well! Already his life has become less about "getting in calories" and more about enjoying playing, enjoying eating, and having energy to take part in family life more. Another busy yet productive week gone... More adventures ahead I'm sure! :) Just 8 more days of school!!

Thursday, May 10, 2012

Mid morning update on Wesley

We started the day with him throwing p but father bing cleaned up, he smiled a bit, so that must have been necessary! His fever also went away after that! We then were waiting on feeds to start. First feed of 2 oz Pedialite went well! Now on second feed of 2 oz Pediasure. Then we wait on the nutritionist to make up a feeding plan, and for the home health company to deliver a pump. GI will be making rounds shortly and hopefully will give us the go ahead for discharge when those are complete. Not sure if they'll want to do a full feed (at lunch maybe?) or whether these trials are enough for us to go home. I'm thinking there's a teaching component that I'm supposed to show that I can do the entire feed alone start to finish, but... This isn't new to me ;). So we will just see if they bring it up or not! :) Wesley isn't in great spirits, but he's doing ok. He nt several hours (5?) on one dose of morphine, but will be changed to Tylenol w codeine now that he's on feeds. Not sure if they'll want to wait to make sure that it takes care of his pain management as well before discharge, which would mean several more hours as well. Not that I'm in a HUGE rush to get home, I just don't like to be in the hospital longer than necessary and I'm sure Wesley feels the same way! :)

Another Wesley update...

Though neither of us got much sleep last night... The night wasn't awful. The nurse was great at responding, which has been a difficulty in past stays, and we were able to stay on you of pain for the most part. Wes slept about an hour at a time from 12-5 then would wake for ten or twenty min, then go back to sleep for an hour then wake up in pain. I scooted him over and got in to the bed with him because he wouldn't let go of my arm and hand unless I told him why and how long (like to use the restroom and plug my phone in). he got maybe 4 hours of sleep but appears to be up for the time being. He also woke up twice trying to throw up, but of course its been over 30 hours since he ate so there's nothing there. We vented his tube, which had just a little air, but he was already resettled by then. Hopefully that will pass when he is able to get some Pedialite at 8. Feeding plan looks like 2 oz Pedialite at 8 then 2 oz Pediasure an hour or two later and progress from there... Hopefully he will tolerate it all well and he can be discharged! He has also been running a low grade fever consistently since surgery. 99/100... And sweating like he's running laps while I have a sweater on next to him. Not sure what that's about... Thanks for your continued prayers!

Wednesday, May 09, 2012

Wesley's surgery

Wesley did well. Botox and phenol injections were easy as expected. The doctor came out to let me know just a few minutes ago. Phenol takes effect immediately, so he can't be stretched at all for 3 days to avoid over stretching and make sure the muscle doesn't tear. Botox takes a little time to kick in but will start taking effect around then. The GI came out and said that the peg tube (feeding tube) went in well, no issues. His stomach still looks irritated, so they also rebiopsied for H. Pylori as well. If it is still positive they'll retreat with a different set of antibiotics. Our GI also commented that it was really neat to watch the Physical Rehab doctor do the Phenol injections! She used a device to find the nerve stream and block it then check it. Pretty cool... I wondered how they did that... Other than that, Wesley is in recovery now, hopefully will wake up and they'll bring me back in the next 20 min or so. He can't eat anything today, and tomorrow will start with Pedialite and then Pediasure. They'll set him up with a pump and nutritionist will set up a feeding plan for him to go home. Hoping to be home by early afternoon tomorrow if all goes well! Thank you all for praying and for your continued prayers!

Monday, May 07, 2012

Accomplishments of the pottying sort

Big news around here... potty accomplishments!!

LYNAE has been in panties at the house for several weeks now, and aside from a need for frequent reminders, she is really doing GREAT picking up toilet training! WOO HOO!  She still doesn't care so much if she wets, so there's still some ways to go.  But, progress is there and the puddles are minimal ;)

JAMES, though not near toilet trained, has his own accomplishment of being able to pull down his pants and pull-up and sit down on his little toilet by himself! This is a great 'independent step' since he could now effectively go in and go on his own when he figures out the urge to go. He also can take his pants and wet diaper completely OFF while sitting on the toilet (intentionally, not just 'playing' and kicking) as long as he doesn't have shoes on.  And, once a pull up is 'stretched' out for him, he can usually put it on and pull it up himself!  He's also putting his own shorts on too!  These may seem like random 'easy' things... and in fact they're easy for most kids.  But for James, they've been a struggle and we're so proud of his accomplishments!  We've been working HARD for this one!  Next is potty training... ;).  We've also been working on putting his own shoes on, which he still lacks the concentration for, but very soon I expect that when we loosen up his sandals that he'll be able to get his feet in to them on his own :)

EMMA, though also unaware for the most part that the toilet is a regular place she should go, is now holding her bladder throughout the night many nights, and going IN THE TOILET in the morning!  Just today, she took her shorts down, diaper off, and CLIMBED UP on the regular sized toilet independently!  Twice!  Of course it takes verbal prompting through each step, and if I'm in there she constantly tries to get me to do it... but... hey, I now know she CAN!  She also got herself off the toilet independently when I wasn't here on Friday, so today I tested the waters and just called her out of the bathroom.  Guess what?? She came!  Emma can put on a pull-up independently, however she generally leaks in them so wears regular diapers a majority of the time so still needs help.  She can take her shorts completely off (of her feet also), and put them on by herself as well.  She is learning to put her socks on but we're not quite there yet...  This week we've also been working on taking off her shoes and orthotics, which can be a little tricky.  She's been somewhat successful and most of all, she wants to continue trying, which is great :).

On a non-potty celebration, I brought cardboard boxes outside earlier and had Aleksa carry some as well.  Then we went inside and closed the door.  I asked her to bring another box outside and put it by the dumpster as well (yes, we have a dumpster... and a port-o-potty... for construction) and just said 'go'.  I had no idea what she'd do, but she opened the front door, walked out, put the box where the others were, and ran back in proud as can be!  Aleksa also helped me by emptying the dirty hamper in to the washing machine.  She did it well and picked up the pieces she dropped and put them in as well.  She put the laundry in unsupervised!  Unfortunately, when I asked her to go help me move it to the dryer, I discovered that she'd put a wet diaper in to the washer (unintentionally... it wasn't one of hers and she wouldn't know not to put it in), so we moved the clothes to the dryer while we searched for the culprit and emptied the 'goo' from the washer, then we moved it all back to the washer to re-run on sanitize cycle.  Now she is likely very confused as to how the laundry works :D

And the week begins

I admit, I've been counting down the days until the end of the school year!!  There are THREE WEEKS left, and though I don't dislike school, I LOVE summer!  Our kid's pools are out and ready to be filled with water (the water only lasts a week or so so we fill them as we are going to use them).  The pool is ready for swimming, the screens around the pool are ALMOST all finished being repaired, and there's a bunch of little people in our house that are excited about jumping in those water holes and making a splash!

Though we'll likely be in the pool this week and not wait for school to be out, we have a busy week this week as well.  Starting off with today to get the house in order, tomorrow James has a pulmonology appointment and Wesley has a neurology appointment.  Then Wednesday Wesley will go in for surgery including a g-tube placement, Botox injections, and Phenol nerve block injections.  He and I will spend about 36 hours in the hospital and hopefully be home by Thursday night as long as all goes as planned!

Thursday is Brianna and Lynae's last day of Kids' Adventure Days at our church!  This has been a great program for both of them this year and we are thankful that the girls are able to take part in this program :).  They have a closing program on Thursday evening which I'm *hoping* we will all be able to attend and watch them sing and dance.

Friday should be nice and low-key, with a church softball league game in the evening.

It's hard to believe it's already a week in to May when it seems like yesterday was February...  But, it's coming quickly!

Our home addition/renovations are coming along well too!  The outside structure is built and most of the framing work is done throughout the two bedrooms and new bathroom.  The concrete has been drilled out for the shower to slope down to the drain, and the "trenches" have been drilled up to put the plumbing in.  I *think* the new plumbing may even be laid (which would explain the horrible smell that evacuated us from our house on Friday when they were sealing off all the fittings) but I haven't been out to look at it since they finished that day due to the smell.

This week they will have the plumbing inspected then will pour the concrete to fill in the holes and I believe to shape the shower as well.  They were actually a day or so AHEAD of schedule last week, which is encouraging that the 9ish week prediction of time from start to finish *could* be attained.  But, this is construction, and we realize the likelihood of that really working is slim :).

Prayers are appreciated for Wesley's surgery on Wednesday and for the family as well.  Mike does great flying solo, but it's still a difficult task.  I'm not really looking forward to an overnight at the hospital at 6 months pregnant either, but I'm glad Wesley has the opportunity to have this done to improve his life!!

Friday, May 04, 2012

Dual Diagnosis: ADHD and Down Syndrome

Another day, another diagnosis...

Today Aleksa went to the neurologist (same doctor we saw yesterday, they just didn't want to do both girls as new patients in the same day).  She was diagnosed with ADHD which was apparent within 2 minutes of entering the exam room :).

And now, I've become "that parent."  The one that says YES, let me try a medication to help with my child's attention and hyperactivity.

Let me first say-- the hyperactivity we have learned to deal with.  Deal we do.  It's not that big of a deal, though it can drive us up the walls some days.  The attention deficit, however, is not only frustrating to US on a much deeper level, but is SEVERELY LIMITING Aleksa's daily life.

People used to believe that there was no such thing as a dual diagnosis of Down syndrome and ADHD, and that the hyperactive and lack of attention were simply "part of the characteristics of Ds".  Having 5 children with Ds, let me assure you that it is NOT apparent in every child with Ds!  Three of my five have no indications of ADHD.  Two... DO.  Very much so :).  The second is younger and not at a place where he has NO ability to concentrate, therefore I don't feel comfortable seeking a formal diagnosis or medication for him at this time.

For Aleksa, some of her history could very well have to do with her attention deficit and hyperactivity.  She spent years... literally YEARS (8 of them) without any type of boundaries that would teach her social appropriateness, or to teach her to be able to look at, focus on, or otherwise concentrate on ANYTHING.  No one ever tried to get her to... so how would she be able to at 9 1/2?

Aleksa has adapted VERY WELL from institutionalized life to family life.  There are still a LOT LOT LOT LOT of difficulties, and more hard days than 'good' ones.  She still has behaviors that top the charts of what we've dealt with in any of our children, and issues with attachment and bonding that are more than we've ever experienced before and show up at very random times... not every day.

I have and continue to be a strong advocate of "don't seek any behavioral (including ADHD, autism, PTSD, etc) diagnosis for your newly internationally adopted child until 12-18 months after the child arrives home."  SO MUCH CHANGES (in those first 12 months especially) that a child that is a total out of control monster like Aleksa was (said with much love, and intentional menace because she would melt down in to the little "Incredibles" baby that burst out in flames and look the devil himself when she saw food and wasn't able to take it for herself and eat it RIGHT THEN (including a child walking down the sidewalk with a lollipop or someone eating at a food court as we walked around at the mall) therefore making life VERY difficult... to grocery shop, go anywhere in public, or especially to eat out and have to wait for food while others around us were eating... did you follow all that rabbit chasing?) can change in to the little girl that has behavioral troubles but generally can conform to whatever we're doing and participate as a part of the family-- with firm boundaries.

After that last sentence, go ahead and ask yourself WHO has attention issues... It's ok :)

If you didn't follow... I strongly believe that the changes in an internationally adopted child initially are significant enough to avoid diagnosing or medically treating behavioral things for quite some time, and therefore we tried other means to deal with the behaviors that we saw in Aleksa.

Here are some of the things that we recognized in Aleksa at 16 months home which are what helped us make the decision to seek medical intervention:

  • She can't look at anything for more than 1-2 seconds.
  • Aleksa cannot put a puzzle piece in a puzzle because of being unable to concentrate long enough to find the right place, put the piece there, turn it and successfully get it in.
  • Aleksa has not learned any letters of the alphabet to be able to consistently identify them even though she has been exposed to them daily for 16 months.  The same is true for numbers and the concept of counting.
  • Given two pictures and being asked for one- using a word or sign- Aleksa cannot pick up the right picture card consistently because she cannot look at the picture cards and concentrate long enough to figure out what we're asking her for.
  • Aleksa cannot sit in one place without very firm boundaries as to where she is to be.  (*some of this is related to her control and attention SEEKING behaviors as well!*)  
  • She is in constant movement whether sitting or standing.  Her hands are always moving, feet moving.  She touches everyone and everything around her, and makes constant "uh, hm, huh, wha, uh, nuh" sounds as though she's talking... but she doesn't talk.  
  • Aleksa has little or no "intentional planning" of movement.  She will go get something, put it down, get something else, put it somewhere else, pick up a crayon, put it back down, get another, draw one line, put it on the side, turn it over, snap it in half, get another crayon, throw it across the room, then stand up, get a book, open it, close it, flap it in her face (she copies Emma in this for a second or two) then  hand it to someone then try to get them to open it, then walk away, then pick up a piece of paper, then go to someone and murmur something (no speech...) then go put it in the trash can, then.....  It is a constant movement without anything meaningful or planned out.
The biggest reason for US to seek medical intervention/medication for Aleksa is that we want to see whether she will have a BETTER QUALITY OF LIFE by being able to control herself some more.  Basically, if a medication will help her to be able to focus on things better, then this could open up the world of LEARNING to her.  letters, numbers, shapes, objects... the list goes on!  It could possibly help her to focus enough to take in from her environment instead of being so hyperactive and inattentive that she can only draw little tidbits from it in 2 second pulses. 

The behavior... we deal with.  That has no bearing on us choosing medication at this time for Aleksa.  The goal is for her to be able to focus, to learn, and to take more control of HERSELF and her actions so that she can have more meaning in her life.  

So, today was 1/2 dose day (and no noticeable difference, I will say...) and tomorrow will be another 1/2 dose.  We will go to a full dose if we find that there are no adverse reactions to the medication after a few days.  We'll do this for a month then go back to the neurologist to evaluate the effects of the medication.  At the moment we're starting on a "classic" medication- a slow-release version of Adderall.

Our neurologist said today that children with Down syndrome and ADHD can have "true ADHD" which medications designed to help this will work well for.  However, children with "mental retardation" (yes, this is the term still...) in general can also have hyperactivity that's due to a different part of brain control which they haven't figured out how to control.  For those children, the traditional ADHD meds will not help, however stronger, more "psychiatric based" medications can re-center the child enough to help with the hyperactivity and attention issues where the ADHD meds may not.  Many of you may be familiar with Risperidone which is often prescribed for children with Ds and autism.  That is a different class of medication than the traditional ADHD medications, but can also be given to children with Ds and ADHD that do NOT have autism.

(*Let me take this moment to clarify that Emma will NOT be put on medications right now, because although she has Autism and Ds, she doesn't have behaviors which severely restrict her social, educational, or emotional life therefore we don't feel the need to seek that for her at this time*)

So... the adventure begins.  Two children with "official" dual diagnosis, and the entrance of the terms Autism and ADHD in to our daily lives.  Though... we've already been living with both, so there's not so much that changed except the titles... and the treatment!

Thursday, May 03, 2012

Dual Diagnosis: Autism and Down syndrome: The Post-Institutionalized Child

Today was the day.  Not one we've been dreading or even earmarked in any special way on the calendar, but that's because our journey to an Autism diagnosis is much different from many other people's experiences.

Today, Emma received the official diagnosis of not "just" Down syndrome, but added Autism Spectrum Disorder,  Obsessive Compulsive tendencies, and Echolalia from a neurologist.

Yes, we knew it was there, knew the diagnosis that would be made, and were already dealing with the effects of these diagnosis...

No, it isn't what we hoped for our daughter, isn't something we wanted her to have to deal with, and isn't something "easy" as a family to deal with.

But deal we do :).

Backtracking...a look in to the early life of a post-institutionalized child

Emma came to us in 2008 at 5 years old.  She was 17 lbs, severely malnourished, neglected (with scars from lack of diaper changes to prove this...), and had the responses that signaled previous abuse.  Emma spent the first five years of her life inside of a crib in a room with three other cribs.  There were chair-height walls in the room and glass windows above that to the ceiling on the interior walls, and a door which remained closed.  It was in the front area of a special needs "infirmary" at an orphanage in an Eastern region of Ukraine.  There were two other rooms just like this one in the front room as well as a small open kitchen and another room which served as a lounge/office for the workers.  Then there was a hallway with 3 or 4 of these rooms off of the hall down one side, all looking the same with four cribs in each.  Micah was alone in the furthest room down the hall for his first 18 months.  Likely because he cried pitifully and constantly.

Emma was not held, made obvious by her total distaste for being held for long periods of time upon arrival in to her brand new "longed for forever family."  She wasn't able to hold the weight of her own head, much less put any weight on her arms, legs, or try to get in to a sitting posture.  She rolled over, side to side, and moved about in her confined space, about the size of a pack and play in the US.  She was treated with medication to help control her body's response to her heart, however she wasn't given the opportunity for the open heart surgery that she so desperately needed... she had a complete AV canal, which in the US is always repaired before age 1, and usually as soon as a child reaches 10 lbs.  Sooner if the child stops gaining weight or goes in to further heart failure before reaching that ideal weight (such as Brianna, who had hers at 5 months old weighing 8.5lbs).

Emma had other medical issues due to her heart not being surgically repaired.  She had multiple series of strokes or TIA's which caused lesions in the white matter of the brain on both sides.  Why? Because her heart was unrepaired and the way it worked allowed clots to form that then passed to the brain and caused strokes.  Emma's left side is now slightly weaker due to those strokes in her infancy and early life.  Another environmental factor that forever changed Emma's life.

Emma was fed broth through a bottle with a nipple cut so large that she didn't have to suck, the liquid poured out in to her mouth, all over her, and she wore as much as she ate.  She sat in soiled diapers, was fed about 8 ounces 4 times a day, and she laid there.  To entertain herself, Emma sucked on her hand.  Not just her fingers, no... she put all of her fingers, fully extended, down her throat and her entire hand except her thumb in as FAR as she could.  Yes, well past where a gag reflex should have been.  She would take her other hand and SHOVE her hand in deeper.

Emma dislocated her knees and ankles.  I'm sure it hurt, but it was a physical sensation, and she had to have SOME input.  She scratched at herself.  She rubbed her face until it was raw.  She rocked her entire head, neck, shoulders, and upper body while she chewed her hand up, back and forth, back and forth.  She had a crudely-buzzed haircut and a balding area along the widest places on her head which showed where the hair refused to grow because of the constant friction.

Emma didn't make any eye contact, didn't like to be held, smelled horribly and had the worst breath I'd ever smelled.  She'd never had her teeth brushed, she didn't care for myself or Michael very much, and she didn't tolerate the attention of Brianna or Kristopher for more than a few minutes at a time.

We had to learn to love Emma.  And she, well, she had to learn to like anything... and eventually to love.  It wasn't an easy process for either of us.  You know who it was easiest on?  Those we'd prepared for it to be the hardest for.  Kristopher and Brianna.  The unconditional love of CHILDREN.  They loved her no matter her smell, her bad attitude, her pushing them away.  Brianna, 2 years old and also with the diagnosis of Down syndrome, saw Emma as a sweet baby.  She would sit and suck her two fingers and rub Emma's head.  Kristopher would try to hold her, encourage her every step in her accomplishments, and admonish her when she wasn't behaving.

And then there's the screaming.  When Emma was done with something, or was uncomfortable in a new situation, or when she just had "something" bothering her... often unable to be distinguished by us... she would scream.  She would collapse in to sobs and then escalate to complete FITS.  There was nothing we could do except keep her safe, lay her down, and often put her in a crib and leave the room.  After all, that was her "comfortable place."  Not the arms of her mom and her dad.

It's hard for adults to bond with a "stinky, smelly, screaming, non-compliant child" that can't do anything for herself and doesn't want you within 5 feet of her.  It's hard for a child that's known nothing but self-reliance, abuse, neglect, an empty stomach, a bottom covered in sores, and didn't understand the idea of touch, holding, communicating, or eye contact to all of a sudden join in to a "regular American family" that wanted to love her, hold her, and bond with her.  For a 2 and 4 year old... it was a MUCH anticipated sister who their mom and dad traveled the world to bring home, and she was a TREASURE.

We have so much to learn from our children...

I know plenty of people that will read all that I just wrote, or experience something similar either in their travels or in their own adopted children's history and they feel nothing but anger.  Anger toward the people who "did this" to her isn't one of the things that comes to mind.  In Emma's situation, the people at the orphanage were not systematically starving Emma (though I know this does happen at other places).  They weren't denying her medical care that THEY could get for her.  They weren't leaving her be because they didn't like her.

The workers in the orphanage where Emma lived did what they knew how.  They treated the symptoms.  They left her alone when she was mad.  They fed her what they were told.  The diaper neglect... who knows.  The abuse, I don't know about that either.  But I know that the women WHOM WE MET and spent time with, and who I have SINCE BEEN BACK TO VISIT AND SHOWN PICTURES OF EMMA THEN were nothing but sympathetic to her, and truly cried tears of joy when we showed up the first day to visit with her after receiving her official referral and permission to do so.  They, of course, thought we were crazy, especially since she and Micah would make FOUR CHILDREN! (We laugh about that now... :) We had 6 kids when I went back to visit.  We were in process to adopt our 7th (Wesley) and had just found out Aleksa was still alive and well when I was there visiting them).  These women were simply doing their job, and turning off their hearts because they KNEW that if they allowed themselves to FEEL, they would be overwhelmed by the day to day of their work.

Societally, they had been brought to believe that the children with disabilities were "less than people" and not only worthless, but unable to understand, feel, etc.  In that society, the amount that the caretakers DID CARE was amazing.  And thankfully, education as well as the opening up of the closed world that is coming about through availability of the Internet is giving human rights a whole new look, especially for children and adults with special needs!  Change is slow, but it is coming...

Jumping ahead to today... The post-institutionalized child, 4 years home in a FAMILY 

Emma is a changed child.  The sparkle in her eyes, the HEALTH in her overall body, and the joy in her countenance are a complete 180 degree turn from the child we first met in Ukraine over 4 years ago!  Emma now understands English, which is of course helpful!  She had her heart repaired, her tonsils and adenoids removed, she had tubes placed in her ears, and she has received glasses to correct her vision.

Our little miss has had several years of therapies including OT, PT and speech therapy.  She's had homebound school services for a time, and then 2 1/2 years in the public school system in a specialized classroom for children with special needs.  She's also had 4 years of LOVE.  4 more siblings added to the family.  Four grandparents that have also learned to love and accept her.  A church nursery that has "learned to adapt" along the way to accommodate her in to children's programming.  Continuous oversight by physicians to see any underlying issues or preventative measures that may need to be cared for.  Emma has received orthotics to correct her foot pronation, intense therapy at home and through private therapy to learn to hold her head up, sit, weight bear through her legs, and even to re-train her brain what a reciprocal movement is.  Eventually to WALK at 8 1/2 years old!

More than anything, Emma has learned to ACCEPT AFFECTION!  She has a special place in her life for her Grandaddy... she will even leave a full plate of food to go hug him and demand she be held by him!  Her mom and dad... we've come a long way too!  We have learned not only to LIKE her, but to LOVE her unconditionally... to an extent that in the first year or two I continued to question whether we would be able to fully do or not.  Now, I know that love takes time.  But... it is absolutely a DECISION.  One worth EVERYTHING.

The Autism Diagnosis: What Autism looks like for THIS post-institutionalized child with Down syndrome

Why so specific?  Because every child is different.  Every story is unique.  Every child with autism, whether or not they have a dual diagnosis, will present differently than another.  This is our Emma, and what things we experience with her which are different than a child that may have JUST Down syndrome.

***Let me note, that several of the things I'm going to list below are also signs of OTHER things, and NOT Autism.  It's really the "whole package" which determines that it is Autism that Emma has, and not Down syndrome with either sensory processing disorder, or something similar to that.  Two of our other children have SEVERAL of the issues described below, but they don't have them ALL.  And we have no concerns that either of them has Autism, however they definitely do have other sensory difficulties :)***

Here's a list of the things which I wrote out while waiting at the doctor's office this morning which describe ways that Emma is "different" then most children, even those with Down syndrome.  They're in no specific order, just written down as I thought of them, and there are likely others that I'm missing...

  • No initiated social interaction with peers
  • Inappropriate responses to children- hitting, pushing, throwing things
  • Self-injury: used to bite hands, put hands in mouth to gag area, and still scratches herself when uncomfortable and pops joints in and out
  • Little or no imaginative play: will mimic rocking a baby and patting, but on her own she hits, puts a book over the doll's head and covers the head and torso with a blanket.  She sits dolls up and bangs their heads against walls, and cannot stand to have clothes stay on the doll.
  • Obsessively overturns furniture: chairs, kids' picnic table, small trampoline, stools, kid's shopping carts, etc.
  • Flaps books, papers, plates, frisbee.  She prefers flat round objects like toy plates. She puts them against her lips to do this often times.
  • Chews anything soft and puts them in to her mouth and down her throat even.  Stuffed animal appendages, stuffed doll hands and feet, stray socks, pillowcase and pillow corners, sheets and blankets, etc.
  • Very little meaningful communication: lots of (repeated, constantly) sounds and will mimic "Emma" or "Mama".  Can show signs for many words (baby, self, some alphabet letters, food words, animals, colors, mom, dad, etc.- probably 30-50) but rarely initiates using signs for useful communication. 
  • Doesn't answer questions- repeats a part of what's asked: for instance "do you want more" she replies "mmm" and signs more.  A second later (even before receiving more) "are you all done?" she replies "ahh" and signs all done and begins to leave.
  • Refuses many food textures: deli meats, fruits such as banana and grapes, most "gooey" solids.
  • Doesn't follow directions outside of her routine or with multiple steps.
  • Craves firm touch, spinning, brushing, loud music right at the ear, etc.
  • Laughs when others cry
  • Often doesn't respond to pain at all
  • Is easily upset in new situations, unfamiliar surroundings, and new people.
  • Behaviorally goes from one extreme to another, especially in new or stressful situations.  One minute clicking joints, crying uncontrollably... next minute uncontrollable laughter.
  • Doesn't understand social appropriateness: belching/gas passing is ABUNDANT when she's uncomfortable, especially.  Also blows her nose with no tissues but won't blow in to a tissue, etc.
  • Not toilet trained at 9 years old.  Can hold urine, but doesn't associate it with the toilet.  Will sometimes go in the toilet if timed well, but isn't anywhere near consistent with it.
  • Throws everything in her path when trying to get somewhere (especially when scooting instead of walking)
  • Affection is very much on her terms: high 5's, hugs, holding hands, etc is ONLY when she is initiating or accepting of it.  If she isn't, she's adamant that she doesn't want the touch or attention.  She will do this with adults, however with children she almost always pushes them away.  She may accept one minute, and the next minute refuse any attention or affection.
  • Lack of reciprocated responses: Emma will occasionally respond "hi" or "goodnight", usually after prompting.  She will often say "bye" in uncomfortable situations, presumably to escape sooner :).
There is no greater gift, than to be able to raise a child entrusted to us by God, and to love her, learn from her, and to care for her. 

In other places, she'd be described as broken, damaged, retarded, useless, unworthy, incapable.  

In our eyes she is perfect, precious, lovable, a sister, daughter, friend, a wonderful gift, a precious life. 

James 1:27 "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."

Wednesday, May 02, 2012

I'm reminded it's been a very long time since I've updated!

We are all doing pretty good t the time being! Construction is well under way! Our four homeschoolers and 2 yr old are all begging for more school and activities and I'm enjoying it just as much as they are! We are getting schedules and such worked out with our therapy center to start a clump of therapies for all of the kids starting next month, which is a wonderful blessing! The baby is growing well, all concerns of difficulties have been released, and... Our next little one is a GIRL! more later along with pictures... :)