"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Tuesday, April 30, 2013

Amazing . . . .

It's a long story, and I'm not going to get into it, but in a nutshell, we ended up having to look for a new dental team for Katya.

Tonight we went for our first visit at the new office in a completely different town--needing to allow 45 min to get there versus the 15 I used to have to do.

The good news is that so far, so good. That's the good news.

The absolutely stupdendous, amazing news??!

That would be that Katya raided the loot box and walked out with not one, not two, not three--but FIVE WHOLE ITEMS . . . and then after she got in the van, Katya spontaneously handed one of her prize items to CHAD!! We were so proud of her! And then when he said, "Oh Katya, could I have the green one (his fav color) instead?!" and handed her back the red one, she let him have the green one!!! And she didn't even fuss!!!

I got so proud of her that my eyes got all teary and if I wasn't having to drive all the way home, I'd have probably bawled like a baby!!!

I'm here to say that I don't think there could be much more joy in my heart tonight . . .

Rejoice with us!!

Charity Blogs About The Visit

Charity has some good blogging going on about our trip to Baltimore. She has blogged in greater detail about our visit to Dr. Dorafshar at her blog here.  Check it out if you would like more photos and details!

Monday, April 29, 2013

Not So Hot News

In addition to the fantastic, totally thrilling news we received last Monday at Dr. Repka's about Katya's miraculous healing of her optic nerves/vision, we got not so hot news the next day on Tuesday at Dr. Dorafshar's.

He is ready to talk seriously about Katya's surgery--yeah, the one we had originally been told wouldn't happen for a few years yet. He would like to have it done THIS year yet.

While he was definitely respectful and made clear we called the shots as to whether it happened this year or not, it was clear he did prefer to do it this year. And he would like to do a lot in addition to the bone grafting from her hip to fill in the "soft spots" where bone wasn't able to grow post-op.

He's planning to seek a lot of counsel and input before he determines exactly what all gets done during this surgery, but he has a long "wish list" of what he would like to do. Some of it, especially tweaking around on her eye location, is "fairly complex" --and scarily risky.

It is going to be very hard, we are afraid, to know what we should agree to or not agree to, once Dr. D. and his team members finish compiling their "wish list".

It was easy to OK her cranial surgery, in the sense that we knew beyond a shadow of doubt that Katya had NO chance of a good future without that surgery. We were firmly and unswervingly committed to following through with it, and were ready for it even before Dr. Carson was ready to do it--back when Dr. Carson was telling us no, he wouldn't do it--it was too risky. He eventually came to agree with us that it had to be done, scary or not, and that there was no option but to at least try. And it was, as far as the actual surgery itself, smashingly successful, beyond anyone's hopes almost, although the recovery period was a big pain due to neglect and ignorance.

Now, Katya has issues that are not medically threatening that Dr. Dorafshar would like to improve or correct when he goes in to fill in the gaps in her skull with bone grafts from her hips. If he's going to be in there working anyway, now is the time to correct what other things need corrected. He said he doesn't think he can give her a 100% "typical" appearance, but he feels quite sure he can improve on what she has currently. It would be nice for Katya's sake to have her appear more "typical". On the flip side, is the risk worth it?? I don't know. We just don't know.

How could we live with ourselves if we said, "Yes" and she suffered complications that ruined what she has, or even died??

Until we have come to a place of peace about this and KNOWING . . . we are just continuing to pray. I know we need to do the bone graft surgery--but what else should we agree to? Or should we reject it all? There's a part of me that wants to play safe rather than sorry, but on the flip side, I don't want Katya to some day ask us, "Why didn't you give me a chance if he could have fixed that?!"

As one relative kindly told me, we will know . . . once we know. Yes. We will keep seeking God's wisdom on this one . . . Whatever decision we make, we need to be prepared to live with the consequences of it.

I don't feel that Dr. D. is being cocky or crazy--he's clearly trying to be very thoughtful and wise in his decision making process here, and I appreciate that completely. We just need to be wise and guided by God in ours as well.

Please pray for Dr. Dorafshar, Dr. Ahn (Katya's new Nuerosurgeon now that Dr. Carson is retiring) and the others who will be involved in the decision making process. And pray for us too . . . I know God knows. ;-)


In other news, Katya's case has been written up and has gone through the first step for acceptance for publication in a medical journal. Dr. D. has promised to make sure we get to see a copy when it is published. ;-) Her case history will also be presented at a large plastic surgeons conference this summer by Dr. D. I am hopeful that through these things, more Drs will be trained and able to better help other kids who have complex medical histories similar to Katya's. Something good better come from all that our daughter has been allowed to suffer. . . something good.

Saturday, April 27, 2013

Fun Katya Fact

Katya now whistles!

It's the funniest thing . . . and we ADORE it.

Our little gal who once had two sounds--screaming, and laughing,  keeps finding creative ways to add to her ability to make sounds, even though she still really can't talk.

We are so proud of her. ;-)



(Katya running in the little courtyard garden outside the outpatient center at Johns Hopkins at her last visit. Amy, please note the skirt! Thank you, W's, for it! She is getting a lot of good out of it!)

Thursday, April 25, 2013

Ownership

When kids first come home from living in an orphange, they often (maybe always?) do not have a good understanding--if any understanding at all--about ownership.

Property in the orphanage is communal generally, and even clothing may rotate around to whichever child grabs it to wear. In Katya's orphanage, it did seem she had two outfits plus shoes for outside and a pair for indoors that were "hers" in the sense that she was seen wearing them again and again and again. But she didn't have anything that really was "hers" otherwise as nearly as we could tell.

The kids clearly had no sense of ownership, as they would try to grab things we were giving to Katya from her, and we had to repeatedly gently but firmly stop them from their attempts.

There are so many ways that we just quietly move through life practicing our "ownership skills" never thinking a thing about them, that it's easy to not even realize how important the ability to take ownership is--that is, until you adopt a child who has no concept of ownership!

We had purchased and taken along to Ukraine a tiny little "Dora" backpack for Katya, filled with crayons, a small coloring book, and other items we hoped she would find interesting and entertaining. When we first gave her the backpack and tried to show her how to carry it either in her hand or on her shoulders, she screamed and shoved the backpack away. Over the last 18 months no matter how much we would offer the pack pack to her, she would reject having anything to do with  carrying it. It got set down as soon as our backs were turned, or shoved back into our hands. She LIKED what was in the back pack, and was happy to pull items out and use them while waiting at Doctor's offices or in the car on a trip. But she was NOT going to carry that little thing--NO WAY. It was not HER job to do it, she was sure, evidently! And any attempts at encouraging that met with more scowls and shrieks.

So you can imagine our utter shock when Tuesday morning when we said, "It's time to go see Dr. Dorafshar and Dr Carson! Come on, let's go!" and Katya ran to the corner of our room at the Children's House, grabbed the back pack (that we weren't even going to mess with that day!) and ran to the door lugging it!

And lug it she did! For the next 5.5 hours that back pack went with her EVERY WHERE all over Johns Hopkins hospital! No one else was supposed to touch it, to carry it, or mess with it! It was HERS--and she clearly demonstrated that she KNEW it!

 (Yes, Charity has fun photographing us waiting--and waiting--and waiting some more! And I had just leaned over to look at something on the Ipad Paul wanted me to see when Charity snapped the photo--I'm not about passing out from the waiting--or the heat!)



Katya appropriately pulled out items to entertain herself as needed. (Here seen in Dr. Dorafshar's exam room.)


Even when she went to sit on Dr. Dorafshar's lap and play with his name tag, she still kept a tight grip on her backpack.




When her wait for Dr. Carson went over 2 hours (he was delayed in surgery), Katya pulled out a snack from HER back pack and was busily engaged in eating it when Dr. Carson was finally able to show up to check out how well she is doing!


Dr. Carson's gentle exams of her head never seem to phase her--if you show Katya a photo with several people, Dr. Carson being one of them, and ask her who has gentle-gentle hands, she will stab his face most emphatically--every time!



I can not tell you how extremely proud we were of Katya's ownership of that back pack, and the responsibility she showed for making sure she knew right where it was each time we stopped, and then picking it up again as we would move on. Such a thing that may seem so simple and yet is so huge for our little girlie in light of her background! And what a good step towards eventual independence, which is our goal for her as an adult!

As Dr. Carson said when he told us Good-Bye (probably for the last time, as he is retiring in June and handing Katya's care over to his associate, Dr. Ahn, who we will meet likely in October), "There's more to Katya than meets the eye. Don't ever let anyone underestimate her!" Right spot on, and exactly what we have been saying . . . it was so nice to have it confirmed "officially"! ;-) We will continue to advocate and fight for her to be treated as the bright and developing child she is!

Wednesday, April 24, 2013

Free Week At National Parks

Just wanted to give you a heads up that there is FREE admission at National Parks this week through the 26th.

When we were in Baltimore Monday afternoon, we had a few hours that were appointment free. It was just the right opportunity for us to go tour Fort McHenry . We couldn't have gone had there not been free admission this week, so we were happy about that! I don't think Chad will ever forget the American history he learned this week. And it was a great opportunity for all of us to get some healthy exercise in the fresh air and sunshine. Katya needed a chance to run off some nervous energy after her visit to the eye specialist, and the little outing before supper provided her just that opportunity.

Monday, April 22, 2013

"Boy, Is It Big"

As Charity shares in her blog post, we got some NEWS today. Some very BIG NEWS.

Long term blog readers will remember how sad and disappointed we were when soon after Katya was home and had her eyes evaluated, we were told that her vision was extremely low--so low they weren't sure how bad exactly it was, but bad enough that she could be close to legally blind. It was recommended that we take her to the low vision clinic for any suggestions they could give us on how to help her navigate best through life.

Well, things got so hairy with her surgery, and then all the upheavals we have had post-op that it all got kind of shoved to the back burner. Besides, we were noticing post-op that Katya's vision seemed to have defnitely improved some. Things she never had noticed before--like miniscule spiders in a corner of a room up by the ceiling for instance--were suddenly visible to her, causing great shrieks of panic.

Little by little, she calmed down, but we continued to notice various ways it seemed her vision might have improved. So we were not surprised to be given good news at the eye specialists at Johns Hopkins today. We were not ENTIRELY surprised, I should say. But . . . we had our socks absolutely 100% about blown off by the news we did get!

Katya's vision has improved. Not just a little bit. Not even say oh, 50% . . . but a whole WALLOPING LOT! Our miracle girl tested out at 20/25 in BOTH EYES !!! 20/25, folks! Are you reading that?!! This is the kiddo who was being told that her eyes were so bad and that it was from nerve damage likely, and that glasses would do nothing to improve it.

At first today (as they had her previous reports in their hands) they tried to tell us that probably the other specialists hadn't known how to get a good exam from her. We said no, what they told us then agreed with how she lived. It matched.

We had seen a change for the better. Did they think that the surgery to relieve the pressure on Katya's brain had helped reverse the nerve damage, along with the fact that we focused on good nutrition, with an emphasis on things that would help possibly heal nerve damage? "It's entirely within the realm of possiblity," they told us.

Here is what the "world renowned eye specialist" told us--"This is miraculous given your daughter's history. We should NOT be seeing this level of quality of vision with a history like she has."

GOD . . . GOD . . . . GOD . . . tears of joy and thankfulness . . . He is an amazing God  . . . and we give Him the honor and glory . . .

Don't you agree with this?? THIS IS BIG, PEOPLE! Our daughter can see! And she doesn't even need glasses to do so!

We absolutely can not wait to tell Dr Dorafshar and Dr Carson tomorrow. I think they will be sooo happy with us!

Saturday, April 20, 2013

Thank You, Stephanie!

We had a pleasant surprise the other week . . . .  a package came to our house . . . and inside was this very useful book!



I was so excited! There are signs we already know in here, but lots of new ones that are useful are in it as well! And because the hands are actual photographs I do much better learning that way than with the books that just show drawings! It doesn't make so much difference to the kids who pick up signs easily, but for this "old dog" who is having a trifle of a hard time learning new tricks, it's especially helpful!

Thank you, kind reader, Stephanie, for the joy and excitement you brought to our house with your surprise package! Thank you for choosing this for us from Katya's Amazon Wish List. ;-)

Thursday, April 18, 2013

School Visit Part 4

When I last blogged about the visits to other schools, and our concerns, we had a good bit of feed back, both on the blog (thank you, blog readers!), on Facebook, and in real life.

I have also had a lot of dialogue with a Mom friend of mine who is a powerful advocate here in our community for families with special needs kiddos. Since speaking with her, I feel a lot more reassured about some of my concerns.

She was able to give me first-hand info on what life in the classroom we are considering has been for her son. She pointed out that even with the kids who have aggressive behaviors, the adult to child ratio is so high that the kids generally never hurt any of the other kids--they are intercepted before anything can escalate that quickly.

She also assured me that the current teacher, Mrs. S, is absolutely on top of the ball with communication with parents, preventing any problems from becoming out of control before you find out. That sounds good to me!

My friend also laid a lot of concerns about transportation to rest. She said that we can politely ask for, and expect, transportation that is appropriate and safe for Katya, and acceptable to us. Since the school district wants to switch Katya to another district to have her educational needs met, it is THEIR job to provide safe and appropriate transportation for Katya. Safe and appropriate does NOT include bus transfers, nor a long, circuitous jaunt on a school bus where she has no one who can communicate with her because they don't understand her ASL. My mentor and friend was most emphatic that if transportation is not acceptable, then we have the freedom to tell them it's a no-go.

Since communication for Katya IS one of our big concerns, my friend reminded me of how fluent and comfortable Mrs. S. is with ASL, and pointed out how much happier Katya could be even in spite of the changes, if she really has the freedom to communicate. We know that since Katya has been having pull-out services since the end of Jan. where she has a Spec Ed teacher who has a bit of ASL background, that Katya is signing more and more again here at home. (Something she had really regressed on after starting back to school in the fall.)

Katya checking herself out before going to school today.

So it is entirely possible that being with Mrs S. could really swing wide open doors for Katya in communication that have only been cracked to this point.

Katya was using the reflection in the window to see the back of her head, we think.
We long--oh so desperately--to see those doors swing wide open for Katya. It's clear that **she** wants to communicate. She makes facial expressions, she vocalizes as much as she can, she points, she leads us to show us things, and she uses what signs she knows, or even makes up her own. Those were things she did NOT do when she first came home. Ignored, shut down and isolated by her lack of speech, Katya huddled in her own little world, breaking only out in screaming at the top of her lungs when the misery of being forced to hold her bladder beyond endurance triggered her bellows of panic, or someone crossed her to the point that she howled in screams of anger and frustration.

Stripped of the most basic elements of being a human--communication, love, kindness, medical care, and plenty of food, to us, the miracle is that Katya not only lived, but that she came out of that able to love, to laugh, and to enjoy life.


And along with that laughter, love and enjoyment of life, Katya has the drive to communicate. She wants to express her clothing choices, her desire for specific foods and such. She sees beauty in the world, and she wants to share it with us. This spring one day, she was wandering around the yard inspecting things, and she found the first crocuses of spring that had come up just in the last 24 hours. She walked to the swing where Charity was, got her attention, signed, "Flowers" and then took Charity with her to go see the crocuses. This is our kiddo . . . and we long for that door of communication to open wider and wider.

Maybe . . .just maybe this new classroom is part of the door. Maybe . . . just maybe. . . . we need to walk through that door for Katya's sake.

I don't know yet, for sure, but you keep praying for us as we keep praying and seeking information. It is hard to weigh all the angles carefully and in a balanced perspective. But we are giving it our best shot, for Katya's sake. She had no voice to advocate for her and to speak out for her. Now she has us, and by God's grace we will speak for her until such a time Katya can speak for herself adequately.

Sunday, April 14, 2013

A Much Needed Date

This afternoon, Charity lovingly handed me her camera, and shooed her Dad and me out the door for a much needed date.

The spring weather was perfectly lovely. The temperatures were ideal for walking in a garden, so that is exactly what we did.



Paul and I had not had a date in a while. It was so good to be out together. I am trying to regain the strength I lost while I was so sick, and walking in a garden is a perfect way to do so.


I had fun being allowed to use Charity's camera! I used to take lots of pictures when I was younger, but I've gotten away from it--partially as I don't have a camera that makes me happy and also just generally too busy. Charity is better at photos than I am, but I still love trying my hand at it now and then.




The frogs were numerous. and while not elegant, they were impressive in size!


Flowers carpeted the ground.



We were tempted into the woods


where large rocks filled my soul with delight.


and the honey combed undersides filled us with curiosity.


The burbling of the creek made my heart sing. I stored the sound in my mind, but I did not try to photograph it.
On our way out of the garden, we ran into a lovely couple. We ended up standing and talking. Katya's story got shared a little bit, and their eyes were warm with interest and compassion. They wondered how we had managed to get out alone and we shared about how kind Charity had been to send us out for a much needed date. They told us that they had been married 50 years and encouraged us to do whatever it took to keep our marriage strong. It was a good reminder  . . . as parents of several special needs kiddos, the strain on us can be very big. It's important to know that we must do what it takes to keep our relationship healthy and strong. We have nothing to give our children if we don't stay healthy ourselves. After a lovely chat with them, we parted, wishing each other God's blessings.

After leaving the garden, we drove to a new place of visual delights. I love spring!



 I spied a welcome splash of reddish pink! A tulip!





And we discovered a little tucked away pool full of fish!


All too soon, it was time to head home. But my heart felt a little lighter, my lungs more oxygenated, and my legs nicely exercised! It was so special to spend time with Paul getting to enjoy spring. I'm so grateful for Charity's unselfish heart, and her willingness to child sit. Hopefully, we get a good night's sleep and then are ready to face the challenges that this very full week looks to be bringing!

What's your favorite thing to do on a date with your spouse?!

Thursday, April 11, 2013

Visiting Schools Part 3

So yesterday I blogged about the postives of the second classroom we visited.

Today the other side that we have to prayerfully and carefully consider.

#1. Transportation. Currently we are close enough to Katya's school that we take her to and from school each day. There are several reasons for that, one of which being Katya is non-verbal and we want to make sure she is not harrassed or hurt while on a bus. Having ridden a bus myself as a young vulnerable child and knowing what happened even to VERBAL little me, I take protecting my daughter pretty seriously. Also, due to her very fragile head, she needs to be safely restrained in a child safety booster seat and belt. She likely could not survive even a minor bump were she to fly around in a school bus in the event of an accident.

But this second school is enough farther away from our house that transportation would be an issue for us due to gas AND time. Like it or not, my schedule is VERY full each day since I homeschool 3 other children, and often am managing our household and lives single handedly as my Dh often works away out of town (when there is work). We are not sure yet what all details may have to be arranged for transportation--we are currently being told we may have to bring her to a meeting point to catch a bus, ride a few miles on a bus, and then transfer buses (!) to get to school and then home again. We will wait to make a decision until more specifics are in place about transportation. But realistically, we can not afford the gas nor the time to go that far and back each day. Realistically, we are NOT going to send Katya there unless we are positive that she is safe both physically and emotionally on a bus.

#2. Many of the children in the classroom under consideration have very big challenges. In some ways, bigger than Katya. They are not developmentally or behaviorally appropriate. At least one of them can get very physically aggressive. This is a huge issue to consider because of several reasons.

   A. Physical aggression would be a VERY LARGE trigger for Katya of how she was treated in the orphanage. I mean, a BIG TRIGGER. A WAY BIG TRIGGER. The current school has worked very, very, very hard this year with Katya and is finally starting to see improvement in terms of her own aggressive behaviors and I would seriously hate to see her revert to them. Not to mention, if she is attacking the other kids, it simply becomes a very ugly and viscious cycle of one kid attacking the other, and then that kid attacking too because they feel unsafe . . . and so it goes.
   B. Katya learns by imitation. She has dropped a lot of strange and socially inaapropriate ways of behaving and relating since coming home to us because she is around neuro-typical kiddos who are (generally) behaving reasonably well and socially appropriate. Katya watches and imitates. We are concerned that placing her into a classroom wtih children who have socially and behaviorally inapporpriate behaviors could cause her to regress and form new inappropriate imitative behaviors. This is not just a minor worry . . . it is a real concern, based on seeing Katya watch and imitate again and again and again.
  C. Like it or not, Katya is medically fragile. It would only take one good hard shove from some of these larger and stronger kiddos to send her flying and could cause serious issues with her fragile skull. Depending on where/how/what she hit, it could be extremely serious or life-threatening.

#3. Katya does not do well with change. It has only been the last half of the school year that she has started to be comfortable enough at her current school that her anxiety level has allowed her to be relaxed about going to school each day, and to settle down and do well in school overall. New situations, new people etc. are not interesting and fun for her. They are terrifying. She has no reason to trust (even yet) that all new people are safe, or worth cooperating with. Her history of abuse and neglect has told her that new people bring scary and dangerous possiblities into her life.

While there is improvement (ie she warms sooner now to new people than she used to at school) changing schools could be extremely traumatic to her, and set her back a long, long way in terms of how well she is able to focus and work withing the school setting. Because Katya can not talk about her feelings yet, they are bottled up and overwhelming to her. While we are working on ways to address this as much as we can, we aren't "there" yet. So the question we have to ask is: "Is switching going to be too much for her at this point in her life? Would she progress better in her current placement due to less anxiety, even if it's not as ideal for her in terms of ASL? Or would the fact that she was able to communicate more with her teacher in ASL reduce the anxiety enough that it would off-set her increased axiety about the new placement?"

There are some other "minor" concerns we have, but these are the major concerns we have for the moment.

As I have said before, lots to think and pray about. Some of these questions there is no way to know for sure ahead of time . . . we can only pray that God directs us clearly into what is best for Katya. I know HE knows, even though we don't. So we think, we pray, we ask questions, we seek input and advice from those who know Katya and our family best, we talk to the school officials, we talk to other parents of kiddos in the classroom, we pray some more, we ask more questions, and then pray some more! ;-)

When we had to make the very hard decision of placing Katya in public school (which was something we had never done before, having always homeschooled all our kiddos) God gave us peace and certainty about the decision even though we didn't like all aspects of it. So I remain confident that He will let us know what we need to know, when we need to know it. I'm grateful.

Wednesday, April 10, 2013

Visiting Schools Part 2

After leaving first school behind, with a great feeling of gratitude that we have a CHOICE and at least some VOICE in this matter, we went on to the next school.

This school was much newer, much larger, and clearly more formal! The office was staffed by two women wearing very professional and official shiny headsets, and we had to not only fill out a log book, but badges that contained our names, the date etc. and wear them at all times till ready to leave the building. I heard swirls of conversation--one in particular caught my ear . . . "the nurse is waiting . . . " Ahh, so this school has a nurse on duty at least part time. Katya's current school NEVER has a nurse at it.

We went through shiny halls, up stairs, and into a small classroom that felt very crowded and not so bright and visually interesting as the other classroom we had just visited. But in that classroom was a teacher who was busy teaching, two aids, and about 5 children. Two children were missing for the day. The room clearly was FULL for the amount of bodies. There were not so many games, puzzles or toys. But every where I looked I saw things that looked like LEARNING was taking place. Posters with things like the entire alphabet along with the corresponding ASL signs caught my eyes. I also quickly realized that I knew three of the children in the room! One of the girls was in Katya's room last year--and Katya clearly liked her and was unhappy that J. was not in school with her this year. The other two children also are a part of the support group here in town that we attend! That immediately felt good to me.

We were invited to sit down at one of the small tables in the tiny kids chairs. As I sat slowly down, with my eyes glued on the teacher who had instantly captured my interest, the chair slid slowly backwards on the highly polished floor, and I landed with an ungraceful "thump" smack dab on my sitter on the floor! Paul and the school physiologist were exclaiming and asking if I was OK. And Paul grabbed my hand and started pulling me up. I sheepishly crawled up off the floor and tried again to get myself on to the itty bitty chair, with success this time (whew!) I was gratified to notice that the kids barely lost any interest in the teacher as she quizzed them using a Smart Board that was displaying the first and last names of all the kids in the classroom.

Now, while I am old fashioned enough not to be a snooty person about the lack of technology, I am also realistic enough to know that Katya benefits greatly from today's modern technology, and one of the things that had concerned me about the previous classroom was that they had no Smart Board, and instead relied on an old fashioned blackboard and then cards taped above it with the numbers, letters of the alphabet etc. I knew they were small enough that Katya would likely not be able to see them well, if at all, and the dark green of the black board with white chalk was not likely to work that well for her eyes either.

So the Smart Board got my immediate seal of approval.

The two aids soon took the children out to the bathroom and then to the lunch room while the teacher sat down and with an open, clear face looked at me and asked, "How is Katya's ASL coming along?!" Turns out that Mrs. S. has worked with hearing impaired children for 30 years and considers herself quite fluent in ASL. And . . . she KNOWS Katya because she assisted Katya's current teacher for two years in her classroom with J. before J. switched to this new school and Mrs S. became her full-time teacher. So last year, Mrs. S. was in the classroom part of the time with Katya. She was very excited to hear about all the positive progress Katya is making, and told me happily that she would love to have Katya join her next year if we decided that would be a good thing for her.

Every question I asked, she had a satisfactory answer for while giving me a clear, open-eyed gaze. When I shared some of my concerns about the stress and fear it would cause Katya to switch schools due to her abusive and neglectful background, her eyes were warm and compassionate and she shook her head sympathetically.  When I questioned how they would work individually with Katya, she pulled a clear plastic shoe box off the shelf and showed me how each child had books made specifically for them to work on the areas they most needed help in. She made clear that this was just one example of how she worked to address individual needs.

Mrs S. stated cheerfully that while they did group activities each day with all the kids, the rest of the time each kid was worked with individually according to their own IEP plan.

The kids in her room span first and second grade ranges, and go to "pull-out" activities such as gym, art, and music with their own nuero-typical age groups. For lunch  and recess, they are always in their own classroom group and accompanied by their own aids.

I asked every question I could think of to ask right then, and she had a ready answer for every one of them.

Paul had to leave before we were very far into the discussion and head to his job in MA but when I connected with him afterwards, he spoke positively of his feelings and impressions of this classroom over and above the other classroom.

Even the school official who accompanied me told me with relief that she felt Katya would do much better here, stating that she knows Mrs. S. and feels she is rock solid and would do well by Katya. Katya's current teacher who we really like and trust a lot told us that she feels Mrs. S. would do well with helping Katya progress as much as she can as an individual.

There are lots of reasons to feel much more comfortable seriously considering this classroom.

#1. Mrs. S. is a well-known teacher to many in this area. When you have a non-verbal child, that counts for a LOT.

#2. Mrs. S. is considered a good teacher by other Moms of special needs kiddos that I know and trust. That counts for even MORE.

#3. As I said, the technological resources in this room are clearly better suited for Katya's needs.

#4. The adult to child ratio is pretty impressive for this area, and certainly much better than what Katya has had to date.

#5. And . . . did you catch?? Did you catch??!!! Mrs. S. considers herself to be FLUENT in ASL. Not just "knowing a few signs"--FLUENT people! This could be one of the greatest things ever for Katya at this stage in her life because it's clear she has chosen ASL as her preferred method of communication at this point in her life. She does not like to use the Hip Talker outside of her speech therapy, and will hide it repeatedly and vigorously protest using it in the classroom! She wants to sign!

#6. Mrs. S. **WANTS** Katya--even knowing her issues and challenges, she wants her. Katya is smart. She knows who wants her and who doesn't. Years of rejection have given her a finally honed sense of who cares to be involved with her, and she wastes little to no time or attention on those who feel uninterested or hostile towards her.

#7. Mrs. S. comes highly recommended as someone who is capable of assessing a child's unique needs and working with them to reach their potential.

Is every thing roses and sunshine and unicorns with this?? Nope. Not at all. Next post I will address some of our concerns. But still, I'm feeling a thousand times more hopeful about this classroom than I did about the first one. This classroom actually gives us something to pray about and need to make a decision about--do we keep Katya in her current school?? or do we transfer her to this school next year?

Tuesday, April 9, 2013

Visiting Schools Part One

Monday, I spent my morning visiting schools. Katya's current school asked that we visit several Multiple Disabilities classrooms in the area and consider whether or not placement in one of them would be a better fit for her in the 2013/2014 school year.

So after dropping Katya off as early as we could at school, Paul and I journeyed in separate vehicles to meet up with the school psychologist at her office, since he was going to need to leave to head to his out of town job before the morning was done. And while I could hitch a ride back to the office, I still needed my own wheels to get home.  I parked my vehicle, and jumped in with Paul and we followed the psychologist to the first school, quite a little ways away from our home. The school was old, small, and very laid back.

When we arrived, we only had to state what our business there was, and were allowed to walk right down the hall to the classroom. The classroom was large, very bright and cheerful, with lots and lots of toys, books and puzzles all over the room attractively and neatly arranged. Several little boys were sitting at the table eating breakfast. I glanced at the clock, and noted that at Katya's current school, all the kiddos would be working by that time of the morning, breakfast having been eaten already.

The teacher and aid offered some information. It went something like this:

"We try to teach them to at least read and write their first and last names--if they can't do both, then at least their first. They might have to trace them . . . "

Our response: "Katya alread reads and writes free-hand first, middle and last."   

Their eyes widen and jaws slack a bit.    

Their statement: "We try to teach them to at least write their numbers one to ten, if they can manage that."

Our response: "Katya does 1 to 10, and is currently learning 11 to 20." Again, the surprised reaction.

Their comment: "We try to teach them to write the letters of the alphabet, even if they have to trace them."

Our retort: "Katya writes all the letters, upper and lower case free hand, and is starting to learn to read some simple words." More wide-eyed, slack jawed responses.

Our question: "Can you help her advance and learn even if she is ahead of all the other kids in the room?" "Well, yes, we work with each child individually . . . " said rather weakly did NOT inspire our confidence.

Before we were even done there at the school, it was clear to both Paul and me that we could NOT in good conscience send Katya to this classroom. Clearly, she would have been advanced beyond all the other kids in the room, and since she learns a lot by watching and following other kiddos, we knew this was not a good plan for her. It appeared to be a glorified baby sitting program--we believe Katya is capable of far more than that.

Also, the current teacher is retiring, and no one knows yet who will be taking her place next year. NOT a good option for Katya who needs to meet the teacher THIS year, and start getting a feel for the classroom. Not a good option for this Mommy and Daddy who don't want a "unknown" teacher for our daughter.

Since we had prayed and asked for God to give us clear guidance and direction, we felt clearly that He had answered that prayer, and made it VERY easy for us to strike one option right off the list. BAM. Done. "Thank you, God!"

To be continued . . .

Friday, April 5, 2013

A Surprise

In Katya's school papers from today, we found this:
 

She's clearly drawn a rhythm (two eighths, one quarter, etc.) and has marked the beat under them, counting the eigth-note. She's right: two eighths to a quarter.  We were/are very excited, because she did not have music class today--she drew it on her paper during a "free" period.  Considering she's only been using a pencil for less then two years, and taking music lessons for even less time, her musical handwriting is very good. And clearly she is learning things in her music lessons!

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We also have another BIG, BIG, BIG surprise. When we pulled out the rest of Katya's paperwork, her behavior charting slip was BLANK. We were so surprised, as it's never been blank before, so we flipped to her communications' notebook to see what it said. "Katya had NO negative behaviors today!"

WOW! That is soooo huge! Katya was tremendously pleased with herself when we praised her for having gentle hands and feet all day today at school! She beamed. Hopefully, this is the start of lots more positive days for Katya!! I know realistically old habits die hard and so we are not likely to have smooth sailing from here on out, but progress is progress, and this is such a very hopeful sign of better days to come! ;-)

Wednesday, April 3, 2013

This is Why


This is why adoption is important.

The photo on the left was taken when Katya was home just a few days. The photo on the right was taken on Easter Sunday this year--less than two years later.


Home less than two years. Photo on Left soon after arrival at home. Photo on right Easter Sunday, less than 2 years later.

Yes, blog readers, this is what nutrition, love and medical care can do even for a child's hair. Think then, what it is doing for her body. . . her brain . . . her emotions . . .  Think how love and care and FOOD is helping her to grow strong and healthy and prepared for life.

She didn't have that before.

Adoption makes a difference.

No, I can't save all the kids (God knows I wish I could!) but I can do what I can do--and for this one, I have made a difference. She has made a difference too. Our home is now graced with her humor, her love, her quirks, and the intense pride we all feel in her. We would have had none of that had we not adopted her.

I think that is what you could call a win-win situation for all of us!

Adoption, done well, rocks. Totally.