Mega Q & A: Katie at one year home

November 21, 2012 at 7:06 PM by Susanna

 

Question: Did you celebrate Katie’s Gotcha Day last week?

Answer: Eeeek! I was afraid someone would ask that question!

Let’s see…uh…*knocking on head*…what exactly did happen last we

ek?

All I seem to remember from the multiple whirlwinds that converged on our household last week…

Wait! Does it count that we spent the anniversary of Katie’s Gotcha Day taking our dossier to be notarized and then driving to Harrisburg and back the second day in a row to have it apostilled?

Along with “outside,” “van,” and “car seat,” one of Katie’s favorite words to hear is “Go!” She absolutely loves to go places, so she was happy as a lark the whole time!

My hopes to make a celebratory meal dissipated into simple relief that we had meals made up ahead for such a time as this and that Katie was happy as a lark!

By the end of the week, I couldn’t have explained exactly how the schoolwork got done! Suffice it to say we could not function like that all the time and I’m grateful beyond words that we don’t have to try! But it was worth it! Our dossier arrived in Tommy’s country early this morning! We are once again in a waiting stretch. We are praying Tommy’s process will keep moving with no delays, but know that God is pacing this thing just so.

And that’s one tiny little glimpse of the enormous amount of real life that happened in the Musser household this past week. We seem to be speeding right along for a family who is accustomed to life in the slow lane. <grin>

Before you go on to read the rest of this post, the answers to your frequently asked questions about Katie…

 

We wish there was some way to make every one of you know how thankful we are for you! No matter how I try to choose words and put them together, they are failing! They sound limp to me and do not adequately communicate the debt of love we owe to so many thousands of you!

We don’t see you as thousands, though, but as one name here in an email, one in a comment, and another name there in a handwritten letter. One name yesterday, another name today, more names tomorrow. Some names faithful and steady over the past several years. So many names we have never seen before, most of you whom we will not meet this side of eternity. Occasionally names of old friends or acquaintances or distant relatives we hadn’t seen for years and hadn’t realized were observing.

You may never know how God has used you, but please know that we could never take you for granted, even if I accidentally lose your address and can’t send you a real thank you note, or never receive your address to begin with!

You have been part of a great cloud of witnesses surrounding us, giving giving giving, loving, helping, praying, strengthening, opening your hearts to us as we have opened ours to you. Allowing God to break your hearts for the little outcast ones, so they have become precious to many of you as they are to Him. Now many of you are a part of the growing number He is calling to care for the least of these in their distress. The big picture from where we are shows the hands and feet of Christ to be lovely.

God chose to open up our family’s world to you for His reasons, and all we can do is ask Him to please bless you as He has so marvelously blessed us through you.

From all of us on Thanksgiving Eve to all of you–

THANK YOU!!!!!

 

And now…about Katie…and this is a long one, folks, so you may want to put your old slippers on and grab something hot to drink first!

 

 

Question: I read about Katie’s smoothie–is it possible to elaborate a bit about the smoothies that you make for her? Do you add anything else to the Pediasure and decaf coffee?

Answer: Daniel is the official mixer of both girls’ drinks. [And I hereby publicly thank you, Daniel, for this selfless service!] He grinds the beans and makes a pot of coffee if there isn’t any left over, divides two cans of Pediasure between Katie’s three bottles, adds the coffee, adds the appropriate supplements and thickener to each one, shakes them up, and refrigerates them for the next day’s meals. Katie doesn’t drink from the bottles; they’re just a handy method of measuring and storing the drinks.

 

Question: Does she tell you somehow that she needs to go to the bathroom? I would love to hear how you helped her learn that.

Answer: First, you need to know that the following answer is as tasteful as I could make it and still be able to communicate the pertinent details to the many who have asked. But knowing that my efforts may not suffice for the more delicate among us, I hereby issue fair warning. You are warmly invited to skip on over to the next question if you prefer.

I am a firm believer in a no-stress approach to this area of life. There is no stress for me and no stress for my child, either. We’re just “catching it,” also known as “saving on diapers.” If they occasionally stay dry and clean and occasionally use the potty, hurrah! If not, no big deal because I’m mentally still in the diapering mode.

When my little ones are physically and behaviorally able to sit on the potty by themselves for a sufficient length of time, I begin to set them on the potty for about fifteen minutes as often as I can manage it after they have awakened or eaten. No stress. Just a part of the routine. We have a potty seat upstairs and one downstairs. I make a big deal if the child is dry and clean, and another big deal if he or she uses the potty for its intended purpose.

So at the beginning of January, when Katie had been home about a month and was still sitting on my lap to eat rather than in her highchair, one night at the supper table I was picking up on signals that she needed to move her bowels–getting very squirmy and passing gas. Almost on a whim, I decided to give it a try, and carried her to the toilet, supplying her with the words she did not yet have. “Katie, say ‘Mama! Mama! I need a potty! Potty!'” Et cetera.

She wasn’t very heavy back then; she weighed somewhere around sixteen or seventeen pounds, half of what she weighs now. I leaned over and held her in a squatting position facing the back of the toilet, with the back of her head against my chest and my hands holding her under her knees. She had really needed to go, and went right away. I told her what she was doing as she was doing it and praised her in very enthusiastic tones.

I kept it up, taking her to the toilet when I could tell she needed to go. At the very beginning, sometimes I missed her signals if I wasn’t holding her in my lap at the time. Or sometimes she didn’t quite hold it all and some went in her diaper before we got to the toilet.

But amazingly, she very speedily made the connection and began to wait longer and longer, and even tried her best to wait for the toilet when she was going through an extended bout of diarrhea during the late winter. She also began to deliberately signal to me when she needed to move her bowels by tilting her head back, looking up intently at my face and putting her hand on my chin or neck.

Through her diet, I help her steer clear of either constipation or very loose bowels. The low muscle tone that came with her extra chromosome can still contribute to a lengthy toileting process, even though she hasn’t been truly constipated since coming home from the hospital last December first.

Once her weight reached about twenty pounds, I began to pull up a chair facing the toilet so I could sit down while holding her. She became very accustomed to that position, and before long, she would go in any toilet or port-a-potty. Of course, in most public places there aren’t chairs available for me to sit on, so I have to grin and bear it.

At some point last spring, Katie began to use word approximations to ask for the potty. “Mamamamamamama, pah, pah, pah, pah, pah.” She was regular enough that I knew the times of the day to take her even before she asked, and would ask her whether she needed the potty. If I had guessed right, she would light up and “talk” about it. If not, she would not give much response.

This fall, we began to look into options that would help Katie to be more independent with toileting.

After researching the various options, we purchased this seat with the help of generous givers to Katie’s Care Fund.

Thank you, dear friends! You continue to be an enormous blessing from God to us!

 

It quickly became apparent just how conditioned Katie had become in just eight months to only using the toilet when I was holding her in that certain position! Oh my goodness, was it ever hard, hard, hard for the first five or six days of trying this seat!

At the very beginning, even when she really needed to go, she would hold it in if I so much as held her over the new seat in her familiar position! I would wait until I knew she reeeeeaaaally needed to go!

I’d start out the process by sitting in the chair next to the toilet and holding her in the position she was used to until I could tell she was right ready to go and couldn’t hold back. Then I’d quickly stand and hold all thirty-three pounds of her over the new toilet seat. She’d immediately stop, but I’d hold her up anyway until my strength gave out and I had to sit back down. This was repeated over and over again. In the beginning, I would eventually have to capitulate and let her go the old way. But we worked at it every time she toileted, and each time, I could see a tiny bit of progress, just enough to encourage me that she would get there eventually!

<It will be worth it, it will be worth it, it will be worth it!>

The thought flashed across my mind, “This is the sort of thing people are afraid of when they don’t want to adopt children with special needs!”

She gradually progressed to the point of not stopping herself from going even when I slowly slid her all the way down inside the seat until she felt the plastic sides of the seat aperture against her skin. Remember that with the other method, she was accustomed to feeling nothing but empty air under her. Feeling something rather than nothing was a hurdle for her, and it was a major triumph when she crossed that hurdle and would go while sitting down in the seat with her legs up near her head!

Eventually, she progressed all the way to using the seat in a typical sitting position, with the straps fastened over her legs to hold her somewhat in place.

It still works best if I wait until she really needs to go, she takes longer now to “do her duty” as Laura so delicately puts it, and she is still not going as often as she previously was in the more natural squatting position. Occasionally, after waiting for what I consider to be sufficient sitting time, I know she’s not emptied out, so I let her finish going in the old way.

Her position has to be checked every few minutes, as she is very fidgety and can scoot herself too far to one side, which can have loathsome consequences about which I need not go into loathsome detail. Heh heh.

She is always so proud of herself when she goes, and that makes it all worth it!

You can see the metal strips across the back of the toilet. The toilet seat hooks onto either side of this solid, heavy metal strip. We’ve installed one in each bathroom at our church building as well.

 

In our smaller downstairs bathroom, which Katie usually uses during most of the day, we store her toilet seat in the bathtub when Katie’s not using it. Behind the shower curtain, of course.

 

Sliding the seat onto the metal strip~

 

View of the inside~

 

Sweet face we see at seven o’clock each morning!

 

And the position that helped her through the last of her transition~

 

Little sister Verity on the other side of the room. How she does loooove babies! Oh my! “Ah-ah baby!” she says, and kisses the baby in the book!

 

Throwing these photos in for good measure…

The girls’ clothing is laid out and waiting for them in the next room.

 

We rarely remove Verity’s orthotics from her shoes in real life; I thought perhaps someone may be interested to see them. Katie’s orthotics were bought using some of Katie’s Care Fund!

Laura and Jane make their beds and get ready for the day while the little girls sit on their respective thrones and keep me company while I blow dry my hair and wash Katie if necessary. I slather her with ointment overnight as her skin is very dry in this weather, and that makes her hair greasy, as you can plainly see in this photo.

 

Then Laura dresses the bigger dolly and Jane dresses the smaller dolly and it is breakfast time!

 

Question: I would love to hear about Katie’s favorites–favorite food, etc.

Answer: Her favorite activities are playing in water, playing in the ball pit we bought for her with some of Katie’s Care Fund and put in the play room…

 

…going outdoors with her brothers and sisters, going somewhere in the van, having someone zoom her around in her gait trainer…

 

 

 

…helping noisemakers make noise…

 

 

…and hearing her family sing very loudly around the table. She loves music and is very motivated by music and some other sounds.

So her favorite toys are any and all toys that she can manipulate to make music or any other auditory feedback.

She can make her own music now. Want to see how?

Yes, she is really standing there all by herself, and nobody put her there!

 

She pulled herself up to standing at a chair you can’t see in these photos and cruised her way slowly over to this spot at the piano.

Joseph’s Steinway upright has a very heavy action and requires a lot of finger strength for Katie to be able to press the keys.

 

Katie’s favorite foods? Ah, just about anything that we like! Too numerous to mention! She rarely expresses dislike of any food.

After years of eating “wish food,” a flour and water mixture that was flavored with meat, vegetables or fruit, she eats a nearly unbelievable amount and variety of real, solid food, plus eight ounces of her Pediasure and coffee drink at each meal.

We wonder whether she gets more real food in one day than she used to get in…a week? Longer?

For breakfast she finishes off a bowl of oatmeal with coconut oil, honey, and flax seeds stirred in, a fried egg, and a banana.

For lunch she will readily eat a nice-sized egg salad or tuna salad or peanut butter sandwich on whole wheat bread and a piece of fresh fruit.

She likes…

*deep breath*

…chicken in Indian simmer sauce over brown rice…oozing caramelized baked sweet potatoes [did I tell you God blessed our sweet potato crop this year? Joshua grew thirty bushels]…spicy beef, bean and brown rice burritos…whole wheat pasta tossed with seasoned chicken and vegetables sauteed with lots of garlic and olive oil…crunchy red grapes…taco soup with shredded greens and chopped tomatoes and black olives…mealy hot Idaho baked potatoes…the best beef vegetable soup ever…fresh, juicy pears…fried rice with lots of meat, vegetables and garlic…richly flavored slow cooker meatloaf…tender baby carrots cooked with peas and onions or maybe honey instead…apples baked with maple syrup, cinnamon, and a dash of nutmeg…humble and satisfying whole grain spaghetti with meaty sauce…peanut butter baked oatmeal…tender turkey in rich homemade gravy over whole wheat toast…chicken cacciatore…Clementines dripping with sweet juice…homemade cornbread stuffing with generous amounts of sausage…

She likes to eat good food as much as I like to make good food.

We also give her a couple of large tubs of baby food pears fairly often to help her combat constipation. She thinks this is dessert.

Her favorite just might be cookies, though, which for her is several very small bits of a relatively healthy homemade cookie. She likes them enough to ask for the next taste by saying, “Kkkkk,” which of course makes me celebrate every time!

 

Question: What are her stimming behaviors?

Answer: It may help you to understand my answer if I first explain a little about her autism. Katie’s autism causes her to tune into certain sensory input far more intensely than you and I would do, and she processes that sensory input differently than we would. She is distracted by sensory events that you and I would automatically tune out.

Her difficulty making eye contact and her sensory issues (both most likely caused by severe long-term neglect from birth), and her brain damage (caused by severe long-term malnutrition and neglect from birth) all interfere in her ability to focus, understand, and learn what would most help her progress in her development.

All her autistic tendencies are like a fog hanging around her, and it takes understanding, creativity and persistence to continue to communicate through that fog even when there is no obvious response of comprehension and mastery. We have learned that she is taking in more than it appears to the casual observer, although you need to understand that she has been significantly cognitively affected by her early mistreatment. In plain English, her brain has been very damaged. It takes patience and acceptance to keep giving input and wait for months to see a response, and then maybe not see that response again for months longer.

When Katie first came home, her main orphanage behavior was to flutter her pointer fingers in her hair at the edge of her peripheral vision. We learned that the finger fluttering was not uncommon for children who were not moved, as it gave them the illusion of movement. She never put her hands to her mouth other than to bite her wrist when she was frustrated.

It has gradually become evident, after her first transitional months with us (in retrospect, around three months), that she is turning out to be sensory-seeking rather than sensory-avoidant. Her two big sensory obsessions are sound and rhythm, especially in combination with each other, and she will focus on them if they are available, or deliberately seek them out or create them in order to keep herself stimulated.
Some examples of that combination of sound and rhythm would be scales or Hanon exercises being rapidly played on the piano, someone sweeping or vacuuming the floor, or someone absentmindedly slapping the palm of their hand with a plastic ruler as they stand and talk.
She has not yet learned how to play appropriately with most toys, with the single exception of items that play music or make other sounds when she manipulates them correctly. She needs lots of intervention and hand-over-hand assistance to play in any other way for longer than a few seconds. She has a different reaction to baby dolls than she does to other toys, and will make a brief attempt to hold them up against herself or her face, but will still tire of them quickly and toss them aside because they don’t give her any auditory feedback. So she is easily bored.

If she isn’t getting an appropriate amount of sensory stimulation from an appropriate source, which we can provide for her to some extent, she will attempt to create some by “stimming,” which for her most commonly is wiggling her finger inside her mouth or against her tooth, kissing or tapping her hand or scratching her fingers on a surface or making some other rhythmic motions or noises.

If she is holding a toy or other small object, she will bang it rhythmically on the side of her head.

In her high chair, she might scratch the seat behind her head, rub/squeak or scratch her fingers on her tray, and/or kick her feet vigorously.

She also pulls her hand inside her sleeve and chews on her sleeve, which is why we roll up her sleeves if they are not snug enough to stay put.

She is constantly in motion, and the happier she is, the louder she gets. We have a whole bag of tricks that help to calm her and minimize the noises she makes under circumstances that require relative stillness and quietness.

If she was left completely to her own resources on the floor, she would eventually tire of even her favorite toys and end up on her back with her head against a wall or other hard surface, tapping her fingers or knuckles against it. If she found a surface that gave a loud response to tapping, she would swivel around and kick it over and over again with both her feet. Or if she found an object that made a noise when she banged it against something, or pushed it back and forth along the floor, she might do that for a period of time.

She has become less sensitive to some sensory input than she used to be, such as the energetic bass notes of a man’s voice or the piano, or the swish, swish, swish, swish, back-and-forth, back-and-forth of the broom sweeping the floor. Her reaction to seeing someone sweep used to be so intense that it would interfere with her ability to keep on eating. We’ve learned to accommodate her quirks, and when we see her begin to give an over-stimulated reaction, we stop the trigger if possible or attempt to distract her attention. It helps her regulate her reactions better if I cross her two hands in front of her and give them some pressure while saying in a calm voice, “Katie, calm down. Calm down.”

What does Katie’s intense reaction to over-stimulation look like?

She doesn’t have meltdowns or even become upset by sensory overload; instead, she usually laughs or makes other loud, happy noises, widens her eyes, and flaps her hands vigorously in a disorganized fashion. (Incidentally, we’ve observed these behaviors in Tommy, and the two children appear to be on a similar developmental level right now!) Alternatively, another reaction of Katie’s is to cross her eyes slightly and go into a “happy zone.”

She tends to stim anytime she is off balance–either over-stimulated or not receiving enough sensory input. You can see her stimming briefly in the middle of the video I’ve posted below. A couple of months ago, I decided to see whether she could learn to put her hands down from her mouth when asked, since it isn’t a hygienic or socially-acceptable behavior, so we began to work on it by simply putting her hands down every time we noticed it, and saying, “Katie, hands down.” As you can see in the video, she understands what I’m saying and is able to comply. Because she is able to control the behavior, and it’s not involuntary, it is not considered a tic.

 

We make reasonable attempts to avoid having her either be bored or overstimulated by her specific sensory triggers. I’m not sure how all this looks from the outside or to the uninitiated, but it does not dominate our family’s life or color how we see the precious and lovable person who is our Katie. Understanding and accommodating Katie’s needs does not cause us stress or hardship. We accept her challenges as a normal part of our family’s life now, and autism is no longer the scary unknown to us that it used to be. It is obvious to us that Katie is just as fully human with autism as she would be without autism, and we love her! We enjoy her very expressive personality and all that she brings to our family! We love watching her love life!

 

Question: Can she be redirected?

Answer: To a certain extent, yes, she can. Picture daily life with a child with the overall capabilities of an eight to ten month old who is in a four-year-old’s body, and you will picture daily life with Katie. She can be redirected in a similar way that a nine month old child can be redirected.

She can definitely be redirected more successfully with non-habitual activities than with her stimming behavior.

 

 

Question: How much has she learned to understand of spoken speech? Sign? Gestural? (How much did she know when she came home?)

Answer: When Katie came home, she understood no language other than her birth name. There are specific ways to help children with Down syndrome with their speech, and instead of receiving that help, she received a near absolute poverty of any speech input for years and years. Even after receiving her baba, and when more than one staff member would enter her room, the babble of sounds around her had no specific meaning to her as words.

After speech therapists became regular visitors to our home and observed my interaction with Verity and then with Katie, they informed me that I am naturally speaking to the girls just as they would want me to. They are valuable in giving me specific suggestions of what words and concepts they suggest I work on next, but my basic way of speaking to the little girls is speech therapy for them, so they get a lot of it! Speech, cognition and feeding have become my teaching strengths in contrast with teaching gross and fine motor skills.

As is common in people with Down syndrome, the receptive language abilities of our two little girls is greater than their expressive language abilities. Katie has learned the meaning of many simple everyday words, mostly names of concrete objects and the names of some simple everyday activities that we have labeled for her over and over again. We can tell her that she will go “outside to the playroom and play in the ball pit with many, many balls,” and her face will light up and she will grow very excited.

Her speech therapist and I gave her a little test out of curiosity one day. I put her down on the floor on her belly and placed a diaper and her toothbrush a yard or so away from her, separated from each other by another yard. Then I began to talk about the toothbrush, telling her to go get it. “Katie! Where’s your toothbrush? Brush, brush, brush your teeth! Toothbrush! Go get it! Go get the toothbrush!” After a long hesitation, during which I was not at all sure she understood or would respond, she smiled and army crawled straight for the toothbrush and picked it up. Then I mixed both of them up and laid them out again, this time telling her to go get the diaper, and again, after a wait, she was successful and very proud of herself!

Right now, her speech and fine motor development are both at a plateau as she focuses hard on pulling to stand, cruising, and crawling on hands and knees. But she has attempted to say many functional toileting words, such as “potty,” “diaper,” and others. She has said “D” for “all done,” “Daddy,” and “Daniel.” She has attempted to say the words shoe, jammies, cookie, and will imitate a short “A” sound and short “O” sound.

She uses the sign for “please” appropriately in various situations without prompting, and the sign for “thank you” with prompting. She makes an effort to wave goodbye, and she can clap her hands when we ask her to or when she’s excited about something.

Her innate desire to mimic is helping her to learn.

 

Our next goal for her is to begin to make the connection between a two-dimensional image and the correspondent three dimensional object.

I’ve taken photos of objects that are familiar to her and her speech therapist is turning them into laminated cards labeled with the word we use for that item. We plan to punch a hole in the corner of each card and thread them all onto a key ring that I can carry with me. As Katie sees each item throughout the day, I can immediately pull out the card and help her make the connection.

Here are a few of them~

van

 

banana

 

bath

 

dolly

 

spoon

 

potty

 

cups

 

And there are others, with plans to expand as she shows comprehension.

 

 

Question: How much therapy does she receive each week? Is it more parent-direction or do they actually work with Katie?

Answer: Katie is enrolled in our local IU-13 program. She was first assessed in our home by a speech-language pathologist, a physical therapist, a psychologist, a vision specialist, and an occupational therapist over several visits last winter. When Joe and I met with the school district in the spring, we explained to them what our educational plan was for Katie and waited to see whether they would be willing to help us carry that out or not.

With Katie’s unique set of circumstances–her extended history of profound neglect, her subsequent attachment and bonding difficulties, her severe delays that were caused by neglect and not by her Down syndrome–because of all this, and simply because we know Katie, we know that what she most needs for formal education for the foreseeable future is someone to teach me how to do physical therapy, occupational therapy, and speech therapy with her, just as the Early Intervention program does for Verity.

We were adamant on several counts.

1. Because of her history and subsequent attachment issues, all of Katie’s instruction would take place in our home. I made this as clear as clear could be. “I would die before leaving Katie all day with someone outside the family.” Yes, I said that, and yes, I meant it. Katie needs physical affection, and lots of it, but not from anyone outside our family. We could not put her into a position where we were unable to give her the physical affection she needs, and where the people surrounding her were not allowed to give her that affection, either.

2. There would be no physical affection or even physical contact with the therapists other than what was actually necessary to accomplish the therapy. I hope at some point to address attachment and bonding issues as they relate to physical affection. In this area, as in so many others, we have been the beneficiaries of the wisdom and experience of countless adoptive families and adoption professionals.

3. I am a motivated and educated mom with experience in teaching another child with special needs, would be working with Katie myself on a daily basis, and was looking for someone to give me suggestions for how to help her progress, not for someone to directly interact with her.

4. Everyone on her team needed to be aware of her extremely fragile bones, and familiar with the protocol for proper handling of a child with fragile bones if necessary.

We explained the reasons for these stipulations. The team bent over backward to agree to them.

So Katie’s therapy schedule looks a lot like Verity’s did back when her three therapists came twice a month. Katie has an occupational, a speech, and a physical therapist who each come to our home twice a month for about an hour each time.

During the summer months, we prefer therapy sessions to take place in the morning so we have the rest of the day for other plans. During the school year, therapy sessions take place in the afternoon to minimize the disruption to the rest of the household.

During each session, the therapist and I discuss the progress that Katie has made, and talk about new ideas to help her in her weak areas. Then I try out the new ideas with input from the therapist. We write all ideas on index cards.

I found this little box at Goodwill for a couple of dollars. Could it fit the need more perfectly?

 

Verity’s cards are pink; Katie’s are purple. We take from the front and put them away in the back. Extra cards are in there for new ideas, and I weed out obsolete activities every so often.

 

 

Question: Is Katie walking independently?

Answer: Nope, but with all the pulling to stand and cruising she’s doing these days, she’s progressed a little closer toward walking from where she was just a couple of months ago!

 

Question: Has Katie started to pull herself forward on the floor at all or crawl?

Answer: When she first came home, Katie would scoot herself forward on her tummy using a frog-leg maneuver, pushing off with both feet at the same time. In order to sit up, she would back up from her tummy onto her bottom while doing a split, causing her mama to have heart palpitations and intervene immediately, haha! After we began putting Hip Helpers on her to prevent the extreme hip abduction that was keeping her from progressing to the next step, she immediately began scooting forward correctly by pushing off with alternate feet.

She still despised the hands and knees position, in spite of my little games and songs to distract her and help her tolerate and maintain it as long as possible. But just in the past month or so we have seen her take this position more and more often in tandem with pulling herself up to a standing position. At times, she miscalculates how far away her target is, and will do a proper hands-and-knees four-point crawl for a couple of feet to better position herself to pull herself up to stand.

 

Question: What is her physical strength like?

Answer: She is relatively much stronger and more active than she was just six months ago, and this is increasing as she gains mobility skills. Compared with other children of her size, she is not strong, but compared with the Katie she was a year ago, well, she’s gone from zero to sixty in a pretty short time.

Her core strength, the strength through her mid-body, is growing, and will be the foundation for all the other gains in strength and coordination she will make.

 

Question: Will she eat finger foods now? Will she pick up her drink to drink it?

Answer: She feeds herself foods that stick together and enable her to hold them in her fist, like banana, and peanut butter sandwich. She does this under close supervision. She reaches for her cup and holds it fairly properly, but because of her fidgety habits and fine motor delays, she cannot yet independently drink from the open cup without our hands to help her.

My next goal in this area will be to begin to help her learn straw-drinking so that she can gain some independence in drinking. Since she has no lip closure around a straw now and is somewhat resistant to it, this will almost positively be a lengthy process.

 

Question: Does she reach her arms out for you to hold her?

Answer: Not spontaneously, but she will hold her arms up if I approach her and say, “Katie, come! Come to Mama!”

 

Question: Does she play with Verity?

Answer: No, but they do show affection for one another at times, and grab each other’s toys at times!

 

Question: In what ways is Katie more mature than Verity or even the little boys?

Answer: In history only.

There is no way to know at this point whether Katie still has memories of the orphanage. I suspect she dreams about it sometimes, as a baby might dream about his former life in the womb before the memory is buried deep by other memories. But of course I can’t know that for sure.

From her photographs, seeing her cute, growing-up face and brightly shining eyes, she may appear to be much less developmentally delayed than she is. But in every way except history, pottying, and size, Katie functions as a baby–cognitively, physically, behaviorally, and emotionally. As a practical result of this practical fact, she is in the place of a baby in our family.

You wouldn’t need to spend a whole lot of time observing Katie before this became obvious to you. In our everyday life with Katie, we do not view her as a severely delayed ten-year-old who needs to be fixed. To all practical purposes, Katie is a baby in a toddler-sized body who has autistic habits, and we are giving her the extra help and support she needs in order to grow and thrive!

 

Her first experience with Play-Doh.

 

 

 

 

 

 

Question: I would like to know specifically what you did to encourage attachment when you brought Katie home. How was it similar and how was it different than the children you welcomed by birth?

Answer: I stayed as close and accessible to Katie as possible at all times except when she was asleep at night. I did not allow others to hold her with very rare and brief exceptions. When pain had to be medically inflicted, I was there to comfort her, but did not help to hold her down or ever inflict pain myself. But I myself gave her all her non-painful care. I became very attuned to her emotions and needs and other communications, and engaged in that dance of understanding that forms between a mother and baby as well as I could with her lack of eye contact.

 

Question: How do you feel her attachment to you and your family is going?

Answer: Up until it was given a hard test, we would have said Katie’s attachment to us was stronger than it is. She has obviously made enormous progress from where she was, but everyone has been keeping an understanding and appropriate distance.

The hard test was her physical therapist. I could tell right from the start just by the therapist’s body language that she thought we were overdoing this no-affection thing. She really pushed the envelope. I had thought Katie had made more progress with attachment, but it hadn’t been tested by someone being that physical with her, holding her upright face to face, singing to her, and being all playful and lovey, et cetera. Katie’s response immediately clued me in.

When I said something about it to the therapist after just a few sessions, I was so nervous that my hands were shaking and my voice was shaking. I said straight out that correcting professionals is a very uncomfortable thing for me, but that for us to go any further together, that there were some things I needed to explain.

I told her that she wasn’t just dealing with a child with Down syndrome or autism, which she had doubtless encountered before, but with nearly ten years of profound neglect from Katie’s birth onward. I explained how that can affect a person’s emotional development and ability to form healthy bonds later in life.

I also explained that every individual we had met during all the months since we had brought Katie home had been respectful of our request for no contact except for this one exception.

The therapist explained that she had to demand a lot of a child, and had to have a rapport with them in order to do that. I said, “You already have that with Katie without trying; that’s the problem.”

We kept talking. I told her that if we had to choose between physical therapy goals and bonding/attachment goals, the physical therapy was going to take second place. After that, she could see that my foot was going to remain down.

Since then, she has demonstrated various moves on me to give me the idea of what she’s shooting for with Katie.

Katie needs to keep growing that bond with Mama.

Look at that beautiful eye contact, would you?

 

Question: I would love to know if you are still in contact with Katie’s baba?

Answer: We send baba Donka a big stack of dated photographs of Katie every few months. Since she doesn’t understand any English, I include a card with Katie’s current stats in kilograms and centimeters, with a few hearts and smiley faces to communicate that we love her!

Here’s a photo of baba Donka looking at recent photos of Katie, and on that day she received a full report from me on Katie’s progress, translated by a friend!

 

We received a special message from this sweet lady recently in honor of Katie’s Gotcha Day…

“Katie, my grandchild, I wish that you may be strong and healthy, and
grow as big as you can get and beautiful, as I am seeing you now. And
bring much joy to your family.”

 

Question: Is Katie receiving human growth hormones? How big do you think she’ll grow?

Answer: No, she is not receiving human growth hormones. Because she is developmentally where an eight to ten month old is, there is no compelling reason to artificially augment her current growth process, and no doctor who is caring for Katie has suggested it.

Nobody is attempting to predict how big Katie will grow!

 

Question: How is her osteoporosis coming along? Are her bones still so brittle?

Answer: We won’t know the answer to that question until we receive the results of her DEXA scan, which is set for the first week of January. It certainly seems to us that all the interventions must surely have made a measurable difference, but we were told that the process of building bone is an extremely slow one. I must admit to being very curious about the answer to this question myself!

 

Question: What size is she in now?

Answer: The shoes she wears with her orthotics are size eight, and the ones she wears without them are size seven.

Her tops are a solid size four now, and her pants are size three or four. Some threes are just the right length but too tight around her waist and some fours are just right around her waist but too long in the leg. Pants have to be made from fabric with stretch to it and have an elastic waist. She can wear a size five or six in those cute short skirts I find so readily at thrift stores. Because of her body configuration–shorter legs and rounder at the waist–they fit her perfectly!

 

Question: Do you have any pets and does Katie like them?

Answer: We have two outdoor cats which Katie likes far more than they like Katie! Let’s just say that she liked them a little too well and they learned quickly! Picture a typical nine month old with a typical peace-loving cat!

 

Question: Do y’all attend Buddy Walks? Do you have a large local Down syndrome support group?

Answer: We haven’t put the extra time into making that local connection yet, because of the other responsibilities we have that take a higher priority. But I understand that it’s a large and active group. I almost went to the first annual Down Syndrome convention in our city in the summer, but there was a schedule conflict, and I consoled myself that the theme was all about a young adult child with Down syndrome and the planning and transitions involved with that stage of life.

I do plan to try it out at some point in the future, but not if I have to do that at the expense of other activities that are more needful for the whole family. We do have a very wide network of supportive friends, and are thankful for every one!

 

Question: What have your high/low moments been?

Answer: Low moments first.

Seeing some of the other damaged and unloved little human beings Katie left behind her be rejected once again. The pain of this never leaves me. Their faces are blazoned on my heart…and to know that they and the rest of the hurt children there are not being loved and valued and chosen as Katie is…the hurt of this is overwhelming. It is The Reason why I didn’t quit writing after we had Katie safely home and it seemed next to impossible to find time to write.

The days when she was learning to use her new toilet. Hard.

The feelings that began to grow almost imperceptibly after a month or so of the onset of Katie’s therapies. Each time a therapist comes, we begin by talking over the progress the child has made in that area. I was used to having regular progress to report for Verity, and hadn’t thought through or prepared myself for how different the experience may be with Katie and her severe delays. She is officially classified as a multiple disability student.

I had previously felt celebratory about Katie’s overall progress over many months, but without realizing it, began to feel down, like I was somehow failing Katie, if there was no progress to report every two weeks.

Bringing those feelings out into the open to be examined and challenged showed me that I was feeling pressure that nobody else was putting on me. They were feelings that were not based in reality, and I bring them up here to possibly help another mom be prepared and avoid a similar experience.

 

High moments?

Seeing some of the children Katie left behind her come home.

Seeing God take her story and use it to help compel other daddies and mommies to go get other little rejected children and bring them into their loving families.

Seeing other good and lasting work that God accomplishes through her story.

And having her sweet smile radiate from her face when she first opens her eyes in the morning and sees me there.

 

 

 

 

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34 Responses to “Mega Q & A: Katie at one year home”

  1. Anna T says:

    I have been praying for you this week and remembering last year when Katie came home to her wonderful family, wow, what a difference a year has made : ) !!  Have a very Happy Thanksgiving dear friend, when I count my blessings I remember you!!  ((Hugs)), prayers and love,  Anna

  2. Kristi says:

    Thank you for sharing, Susanna! You are truly an inspiration, I don’t know where you come up with the energy and motivation to be so.on.top.of.everything. like you are! It’s incredible- and intimidating! You have done such a FABULOUS job, and it has been such an honor to watch Katie progress and grow in your love and care for her. It’s truly beautiful! Another question, if you get a chance to answer…why are you so strict with Katie not bonding with anyone but you? I know there are reasons for this, I just had not heard the original reason. Does she bond too easily? Does it disrupt your bond with her? Thank you so much for sharing! God bless you and your family, and Happy Thanksgiving!!

  3. maureen a. ;) says:

    Thank you, Susanna, for taking the time to give us that wonderful newsy post.  We love all the pictures, and that message to Katie from her baba…just precious!  Happy Thanksgiving to all of you!!  <3

  4. Jen says:

    What a year!  I loved seeing her splash in the tub, having fun! 

  5. Raf says:

    That’s a pretty neat toilet seat, but there’s something missing – unless it’s maybe just out-of-shot? A footrest of some sort! Nobody can effectively evacuate their bowel without their feet supported, preferably so that their knees are juuust a little higher than their hips. It helps hugely with generating – erm – pressure, in the lower abdomen, you were helping that greatly before with the way you were holding her to toilet.
    Katie’s toilet chair does come with its own footrest – the little guy modelling it in this page is using it – http://www.especialneeds.com/bath-toileting-diapers-toileting-commodes-aquanaut-toilet-chair.html but I’m sure the right height stool or stepstool would do the job – and might in future also help Katie with transferring to the toilet by stepping up rather than just being lifted on, too.

  6. Rita from Spain says:

    Susanna, thank you for taking the time to write this and let us know all about Katies progress, which is amazing….looking back when she came home and now..its just a miracle…created by your family ….HUgs….

  7. Becky K. says:

    My eyes stayed dry until I saw Baba Donka…..How she must LOVE getting those photos and hearing about Katie’s delightful new life!

  8. Deanna Rabe says:

    This was a great report Susanna!
    Even though I get to see her nearly every week, I realize that I was thinking she was not as delayed as she is, because of her growth and her beautiful smile!  She has come so VERY far from where she was, praise the Lord.  She is in a healthy, happy, loving home and that is the best therapy of all!

  9. Susanna says:

    Raf, great point! We do have the footrest that came with the seat, but it’s ridiculously short for Katie’s needs, so we figured we’d save it for the future. But Katie’s got a Daddy who’s a carpenter, and this is just the sort of problem he’s good at solving–something just the right height for her that she couldn’t push away or kick over, with straps to keep her feet in place. :) Thank you so much for this helpful comment!

  10. sabrina says:

    Susanna, I know how long it must have taken to put all of this together. Thank you so much for being willing to share about Katie’s progress. She is amazing and it’s been such an amazing year watching her come to life.  I know you dislike the praise, but you really are just the right mom for Katie. God knew just who she needed when He brought her to your family.

  11. Missy says:

    Wonderful update! I was amazed at all the terrific vocalizations Katie was making in the tub. High pitches, low ones, consonant sounds… She is doing so well. I have been curious about the discipline part, how do you know if she can understand what she is not allowed to do.. but you figured it out. So when therapists come to see Katie and she shows off her accomplishments do they clap and verbally praise her and do high fives? I’m sure they do and that builds rapport. I know it is difficult to not want to give her a hug, ahem, but that bond with her family is most important. And all kids should have a choice about being touched if at all possible. Okay, off my soapbox. :) I was surprised that Verity can get to a standing position in her Hug Helpers. There are so many cool inventions for kids with special needs now. Thanks again for a great post.

  12. Holly D. says:

    I love hearing all the details about how Katie is doing and what she is up to.  I love your remarks about how you’re dealing with the attachment to you.  I know Katie will get there with her attachment toward you because you’re doing such a great job with handling this and addressing all her needs personally.  My daughter only spent her first 2 years in an orphanage and no one in my family really understood why they were not allowed to show her affection for quite some time.  No one was allowed to hold her for six months, and if I had it to do again, it would have been a lot longer. Honestly, I think it took her well over a year to really differentiate between us as her parents and not just another caregiver, and she HATED to be held, sit on our lap, or anything physical for at least a year. Now she’s perfectly attached to us and seeks our affection as a typical child would. So many people do not understand the affects of the long term neglect on the brain and how crucial it is for attachment/bonding to a primary caregiver. Katie having languished for so many years in the orphanage will probably need some more time to build the attachment, but I bet there will be a huge change by her 2 year update and she will be climbing onto your lap snuggling :-)  Oh, and about her chewing on her sleeve…my daughter was doing this last year in kindergarten a lot.  I talked to her OT about getting her a sensory necklace or bracelet. She got her both to use in school and it seems that this was enough for her to pretty much give up the chewing shortly thereafter.  Cannot wait to hear more updates on Katie, and especially how her next bone scan is.  Also, I figure she wouldn’t really play much with Verity because really Katie is only only like a one year old and they really wouldn’t know how to play and interact.  In a couple years they will probably be having so much fun playing together. Happy Thanksgiving to the most wonderful mother I’ve never met

  13. Susan says:

    Thanks so much for the updates – I feel as if all of your readers are walking along Katie’s road, as she leads the way with your loving guidance. What an adventure!

    I, too, was moved by the picture of Katie’s sweet Baba Donka. What a blessing she continues to be for Katie! Seeing Katie flourish and grow in so many ways must be a dream come true for her.

    Thanks again – nice to see Katie’s “first dollie” once again! ;-)

    Susan in Ky
    Cousin to 2 from EE       

  14. Denise says:

    Oh wow.. what a wonderful post!!!

    THANK YOU for taking the time to share all of this-  I LOVED reading it.

    You and your family are doing a wonderful job.
    I love hearing how much your other children help.

    So thankful for you— with out you and Katie and Verity- I would’ve never heard of RR maybe, and then I would be missing a dear 8 year old boy…..   THANKYOU for stepping out in faith– and sharing your story!!         

  15. Jane says:

    Susanna, Joe and Family,
    May God bless you and keep you this Thanksgiving.  Thank you for sharing your family’s journey with me/us.  It reminds me every day to pray for the children left behind and to remember that God exists in the big moments and in the fastest of seconds.  
     
    This Katie update was such a gift.  I showed my husband the video and he exclaimed, “That is Katie? From last year Katie?!!!!”  Yes, from last year Katie…
     
    May Grace be yours this holiday season, from our family to yours.
    Jane, formerly of California, now from Portland, OR (we just relocated)

  16. Viv says:

    A wonderful honest and compelling update thanx Susanna 

  17. Nanette says:

    Thank you for taking the time to write this.  So interesting and exciting to read all about your sweet Katie.  Thank you for giving your days to help her grow and learn and love.  

  18. Psalm127Mommy says:

    Dearest Susanna – I am wracking my brain trying to figure out why decaf coffee? I am sorry if you answered this before.  I know you have a reason for all you do – and I have used many of your ideas with my own precious little one…so give me the scoop on the coffee… :)

    In Christ’s love –  
     

  19. Susanna says:

    Coffee for constipation, Amy, and decaf so it doesn’t negatively affect her sleep. I learned the coffee trick from another T21 mama. It works for Katie! :)

  20. Psalm127Mommy says:

    Ahhhh!  Thank you!  We are going to try it! :)  May the Lord continue to bless your days and your family, my sweet friend!

  21. Susanna says:

    Thank you, Amy, you too! Love you!

  22. Kristina says:

    Yes, as an adult I don’t drink coffee hardly ever, except it is the only food/drink that acts as a laxative for me, so I use it occasionally for that. :-)

  23. Lara Font says:

    Your family never leaves my prayers even if I haven’t been busy writing! what a wonderful report!! Happy Thanksgiving my friend, truly so much to be thankful for! XO, Lara

  24. Rachel says:

    Susanna, this post was so helpful and encouraging to me! I’m so glad you went into detail for us… my Jordan is so similar to Katie in many ways (autistic behaviors, being a baby in a toddlers body, attachment, etc.). I am really encouraged about this coming year. I have been unable to give him the more intensive devoted mother that I wanted due to a hard pregnancy and a move immediately after he got home (unplanned!). I’ll be stepping things up as my newborn grows and gives me longer breaks to share myself with the other kids. I am especially encouraged to talk with him more. That is something I can do right now! Thank you!

    Regarding straws: Jordan would close his mouth around a bottle, but didn’t have a good suck. Just a weak one. And we didn’t have luck getting him to suck more than one suck on a straw after giving him a taste… and it takes mor ethan one suck to bring the liquid to the top. BUT! We found a solution! We use a cup that we can help “push” the liquid up for him, to give him that first taste. Then, we use a one-way valve at the bottom of the straw. Not only does this keep the liquid up at the tippy top of the straw, but it has helped him coordinate his suck so there is no pushing the liquid back down the straw. Finally, we got a couple lip guards since he was getting frustrated putting the straw down into his mouth too far. After several months, we’re starting to be able to take away these aids now and then without too much frustration. 

    Here are links to what we bought and like:
    Cup with suctioned lid: http://www.arktherapeutic.com/TAL3AR.html
    Valve http://www.arktherapeutic.com/SFVxAR.html
    Lip blocks (also good for tongue thrust) http://www.arktherapeutic.com/LPBL106AR.html
     

  25. Rachel says:

    p.s. If you see this Jane, send me an email! We’re in the Portland metro area too! brianandrachel.davis@gmail.com

  26. Susanna says:

    Wow, thank you so much, Rachel, both for this tip and for putting it into the comments so other parents can also benefit!

  27. Colleen says:

    Precious child of God. We love you, Katie. Happy girl! Susanna and family: you are such a blessing. Thank you for your ministry. All our love. The H Family. 

  28. Holly says:

    Susanna,
    This is a great post!  It’s wonderful to hear about Katie’s progress, and it’s wonderful to have someone “paint the picture” of what daily life might be like with a child with special needs like Katie’s.  We’re working on the beginning steps of adopting, but have had a hard time finding detailed descriptions of what life could look like.  Thank you so much for all the time and effort you put into describing all this.  It makes us better able to make informed decisions.  You’re helping someone else on the journey. 
    Huge thank you again from my husband and I!
     

  29. Rachel says:

    I wanted to add – I used drinks that Jordan LOVED for the first little while with the straw practice. The kinda thick apricot nectar that comes in a big can was what worked for us. 

  30. john says:

    Shes growing  so fast
    its so  exciting to see
     

  31. Jenni says:

    Hi Susanna!

    Thank you for another wonderful update about precious Katie and your family!
    Your home therapy ideas are fantastic! I feel like I owe you such a debt of gratitude!
    It is because of you that we found our son that we are working on bringing home from the same place that
    you found Katie. Your story brought this place so close to my heart, and I praise God that we are able to be a part of this story to bring these children into the light! May the Lord bless you!
     http://www.gatheringhisblessings.blogspot.com

  32. Lauren R. says:

    Susanna, I have been following your blog since before you brought Katie home and am in AWE of the progress she has made in just a year! Unbelievable what love and patience can do! Always wonder tho, with so many kids how do you find the time to spend so much of it with Katie, especially being her only caretaker? From reading, I assume she is your first adoption, and am amazed you are so knowledgable in what and how to do things that are best for her! (ie: being the only person touching her, knowing what to demand from the school program, how to start feeding and teaching her all she has never learned?(you get the picture) I’m sure alot is because of your experience with Verity, but Katie has multiple disabilities which have to consume even more of your time. Also, what will happen to all Katie’s one on one time with you when Tommy comes home? You can only be in one place at a time? I get overwhelmed just reading all you seem to do for her while keeping the rest of your children on task, and the constant advocating for all the other sick Pleven orphans. You are truly a SuperWoman!!! I hope your family knows how lucky they are! Please keep your cyber prayer warriors updated. Can’t wait to see the wonderful progress Tommy makes!

  33. Susanna says:

    Lauren, I LOVE the questions you have asked, because they highlight some common misconceptions about this lifestyle. I’m adding them to a FAQ post about the mama of the family. :)

  34. Rachel says:

    I’m looking forward to reading your mama FAQ too, Susanna! :-)

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