Grab something warm to drink, sit in your favorite comfy chair, and go ahead and put your feet up while you’re at it. This one is LONG!
Does Katie help with dressing and undressing?
She doesn’t help to dress herself yet other than pushing her hands through her sleeves and stepping into her pants when verbally prompted. But if we don’t take precautions, she’s great at undressing herself with no prompting whatsoever! We always put a leotard on over her pajamas to prevent her from stripping herself entirely in her bed during the night. If she’s wearing a zippered sleeper, we put that on backwards before adding the leotard. She wears tights, not socks, under her two-piece pajamas, or they would be pulled off in a wink!
Isn’t she so cute?
Can Katie self feed with utensils/can she eat with a fork?
Katie made slow progress toward eating with utensils up until the late spring of 2014, when a feeding team observed that rather than chewing, she was just working the food to the back of her mouth and swallowing. They recommended that her school para and I help teach her to chew by placing small bites of food between her rear molars on the side she was using most. Over the next year, each time they re-assessed her, she had made noticeable progress toward chewing, but it took a full year for her to learn a true rotary chew.
After she learned to chew her food sufficiently, the feeding specialists approved her to begin practicing with utensils again. It has been slow going, mostly due to her “learned helplessness,” a common post-institutional-neglect behavior. This means she needs to be prompted to pick up the fork and take each bite. Sometimes she responds to a verbal prompt, “Katie, poke and bite!” If not, such as when she’s distracted, I tap her hand to remind her to pick up her hand and place it on her fork handle. She needs help spearing the food with her fork, as her grip on the fork is loose. But she nearly always gets the bite into her mouth independently, and then drops the fork back onto her plate. After each bite, she will put her hands back down and let them rest there indefinitely until she is prompted again. She does much better self-initiating when she is eating finger foods.
Katie at school, eating with a loaded fork that was handed to her~
It may take some years, but I’m confident that Katie will eventually learn to feed herself independently.
What are her favorite foods?
She loves scrambled egg, creamy chicken salad, bananas, and peanut butter. She actually likes just about everything we give her, except for very cold foods or tart foods like grapefruit or fresh strawberries.
Here is her “What were you thinking, Mom? This is way too cold!” face.
She also despises corn and cooked green vegetables of any variety, like many little kids do!
The only dessert we’ve given her for several years now is birthday cake at our family birthday parties, but to her, a birthday is all about the cake! She starts talking about cake, saying, “K! K!” when we bring the cake with the lighted candles, singing to the birthday person. She soaks in the whole cake-eating experience fully, with giggles and sometimes an ecstatic sugar trance!
Not the greatest photo, but here you will observe her chortling in anticipation of her next bite of cake!
Does Katie need to have liquids thickened? Does she frequently aspirate food or liquids when she swallows?
She does aspirate thin liquids. This was made obvious to me early on by her coughing and congested breathing after eating things like small chunks of watermelon, so from the beginning we thickened her liquids to the point–honey-thick–that she didn’t experience these symptoms. Last fall, this mommy diagnosis was officially confirmed by a swallow study. After experimenting with various thickeners, we settled on Thick-It to thicken her daily ration of forty-five ounces of fluids, roughly three parts water to one part juice for flavor. (We use funds from Katie’s Care Fund to pay for this and other ongoing expenses for Katie’s special needs that Samaritan does not share and insurance does not cover. We appreciate those who are still faithfully giving to her fund, and always let them know how we are using their gifts to help Katie!) She drinks with assistance as needed using a small pink cut-out cup as long as she cooperates, then we switch to using a maroon spoon to feed her the remainder.
The thickened liquids assist her during the meal to more thoroughly clear her mouth after chewing and swallowing. She typically swallows several times for each bite to get it completely down, and there is a lot of residual food in her mouth after her final swallow.
Katie drinking at school~
Does Katie go to the toilet without prompting and no assistance?
Does she climb on or off her potty?
Does she wipe after?
When I read these questions, I realized I must not have been sufficiently clear here on the blog about Katie’s developmental level, so I’m going to digress in order to address this for a moment. Some of this will be very familiar to those of you who have close personal experience with individuals with severe developmental delays.
I should probably state outright that if you are a reader who prefers a completely rosy picture of Katie, please feel free to skip this section, as it is a very forthright description of where she is right now developmentally. We realize that to many inexperienced outsiders, a list of plain facts about Katie may sound overwhelmingly negative. From our perspective? We have adapted our life to her needs so thoroughly, her needs change so little over time, she has so few medical needs now, we have so many supports in place, and she has a such a pleasant temperament, that we consider her to be easy to care for.
Katie requires total care for all her daily living. She is completely dependent on others for all the things she needs to do and to protect her from doing things she should not do. Developmentally, she tests similar to an 18 month old overall, but with cognitive, sensory, behavioral, social, communication and other challenges due to the impact of her history of severe neglect on her diagnosis of Down syndrome.
If you can visualize a super cute and happy non-verbal slow-moving teenaged toddler the size of a six year old who engages in constant odd behaviors and noises and has abnormal reactions to auditory stimulation and the physical proximity of other people, you are getting close to a true picture of Katie. There is very little about Katie that is typical, and the more specific background information you have, the better you will understand her and what her actions mean. She is more advanced in some areas and more delayed in others than most would guess without detailed background information.
What do her developmental delays look like in everyday life? She needs an adapted bed to prevent her from wandering during the night when she wakens due to significant sleep apnea, a high chair with a three point harness and a tray to help her learn to feed herself and prevent her from moving restlessly and wandering off during a meal, an adaptive potty chair to prevent her from making that particular kind of mess, a special seat (Rifton) with a three point harness, foot restraints, and a work tray to help her focus at school, a car seat to keep her from moving about a vehicle, and a wheelchair with a three point harness and foot restraints for going anywhere outside our home that requires walking long distances, keeping her contained around other people and their stuff, or sitting still for a period of time. We step her out of her bed in the morning, put her daily thyroid tablet into her mouth, carry her down steps or have her sit down, roll over, and slide down feet first on her belly, prompt her to face forward and stay on task while walking up steps, guide her to where she needs to go next by prompting her and sometimes holding one hand over smooth, level surfaces or holding two hands if there is a major auditory or other distraction nearby such as a horse-and-buggy or on inclined, unstable, or very uneven surfaces…
Katie kept careening around in front of me because I was only holding one of her hands, albeit in a firm grip, and she really needed the stability of two hands to steady her on this surface. But the photo looks sweet, anyway! Thanks, Mindy!
…prompt her to climb into her high chair, potty, wheelchair, or car seat and fasten the restraints around her, put her bib on and off, feed her meals, wipe her face and hands during and after meals, wipe her after pottying, hold a tissue to her nose when she needs to blow it, wipe her face and sometimes her hands and hair when she’s been alone without a tissue, keep her hair short enough that it doesn’t reach her nose and mouth, give her baths, brush her teeth, comb her hair, diaper her (she wears small adult-sized briefs with an additional insert or two), dress her, guide her to appropriate activities, redirect her from inappropriate activities, make sure that her immediate environment is clear of items that are inappropriate for her and could be damaged or destroyed or cause harm to herself or others, and calm her when she’s overstimulated by reminding her to calm down, talking in a soothing, matter-of-fact voice about whatever is overstimulating her, and sometimes using deep pressure to center her.
Katie’s overstimulated looks like very happy~
If given the opportunity and not caught in time, she might shake the side of her crib so hard that she wrenches the hinges out, rip up books with paper pages, hit glass windows with hard toys to hear the noise it makes, bang or vigorously rub her own head, ear, chin, or chest with a toy, put a thumb and finger into her mouth and blow very loud slurberts, pick up the Sit and Spin and try to bang it on the table when it’s set for supper, bang any hard toys onto any available hard surfaces, reach out and touch people who come close enough to her, including total strangers, laugh high-pitched, fake laughs or make other loud noises regardless of what’s going on around her, sit on the floor or bed and lean completely over to rub her face across the surface (which contributes to chapping during dry, cold weather), sit with her ear up against one musical toy and push the same button over and over again indefinitely, blow stuff out of her nose and smear it around her face and into her hair, occasionally scratch at the mucus on her face until she has blood under her fingernails and scratches under her nose (I’ve found her in this state a couple of times when getting her from bed in the morning), pull her shirt up and shake it, pull her skirt up and shake it, undress anywhere, public or private, pull piles of folded laundry over in order to choose an item to shake near her head, pull her foot up to her face and bite on her shoe, pull her foot up suddenly, unintentionally hitting me in the face with one shoe while I’m strapping her other shoe into her wheelchair restraint, pull her hair across her eyes and mouth while moaning, crossing her eyes and putting both her legs straight out to the sides and then up to her shoulders, suddenly cough or sneeze with a mouthful of food or juice, inadvertently spraying my face and shirt, immediately pull off all items placed onto her head, such as hair clips, hoods, hats, and so on.
Her foot on its way up~
After reading the incomplete but candid list above, perhaps you will understand why I see it as part of my job as Katie’s mom to help her be as socially appropriate as possible and protect her from negative public opinion. I am an admittedly over-protective mom when it comes to Katie. I want her to learn good social habits and want the people around her to understand how to appropriately interact with her and see past her oddities to who she is as a person. As severely delayed and as adorable as she is, I do not indulge her or overlook her poor behavior, because she is not dumb, a curiosity, a baby, or a pet. I see what she is able to do and to become with appropriate intervention. She has demonstrated that she is able to learn appropriate behavior. And learning it will help her all her life.
Okay, so that was more than a moment’s digression! Back to the potty topic! I’ve tried to keep it tasteful, but as always, please skip to the next section if discussions of toddler-level toileting details are more than you can stomach.
Katie has scheduled toileting habits rather than being truly toilet trained, and she has a mixed bag of toileting skills. She is nearly 100% bowel continent, but not at all bladder continent. She doesn’t use a typical toilet but rather an adaptive potty seat which holds her firmly in the correct position. If she is not held in the correct position, a messy situation results, as she is extremely restless, constantly shifting her position, and unaware of the consequences of her actions in this regard.
She understands the word and sign, “Wait!” When I can tell she needs to go, but has to wait, such as in the bath or in the car, I say, “Katie, wait! Can you wait for the potty?”
She is completely dependent on others to take her to her potty after meals, and only occasionally asks for the potty by saying, “Pah-pah-pah-pah-pah.” This is a skill she used to have, but has largely dropped, even when she is growing distressed and needs the potty very much and I prompt her by modeling it to her. Sometimes she will tell me, “Buh,” which means the same thing.
She has absolutely no conception of personal modesty, but does need to feel relaxed in order to be successful at toileting.
She takes her time while pottying. This has to do with her low muscle tone and lack of sustained motivation, as she never comes close to being constipated. We have found through trial and error that for the greatest success on the adaptive potty, where she is unable to be in the ideal squat position, we must adjust it and position her in it in as close to a squat position as possible, use white noise to make a sound bubble around her (preventing auditory distractions), give her about forty-five minutes completely uninterrupted by anyone other than me (preventing physical proximity distractions) to help her focus on the task at hand, and sometimes give her four to eight ounces of squeezable fruit pouches.
With pottying, as in every other area I can think of, Katie is the most successful at focusing on gaining and applying skills when she is very calm, even bored, because of her significant sensory issues. This can be difficult to understand and accept, because it seems to be counter-intuitive, it presents such a contrast with most typical kids, and she appears to be so much happier when she’s over-stimulated.
There is a time for fun and silliness…
…and there is a time for focusing and applying herself…
…and for Katie, the two just don’t mix well.
Do you think she will ever be potty trained?
Let me just say this. I still find it incredible that Katie understands and has mastered the toileting process to the degree that she does, and I still make a big deal about every single potty success! Knowing her many limitations as intimately as I do, I’m guessing that it would take immense, intensive, one-on-one, very long-term effort by everyone who works regularly with her for her to be truly toilet trained. From where I stand today, it just doesn’t rank that high in importance in the big picture of life. Maybe someday I will think differently.
Does Katie understand “No”?
Yes, she does. Often, all I need to do is catch her eye or say, “Katie,” to remind her that what she’s doing is inappropriate, because she already knows it. But we have a few rules for her, such as, “No-no spitting,” or “No-no banging (such as toys on her face or head),” and then some rules that change according to whichever stimming behavior she’s currently trying out. So you might hear me say to her, “Katie, no-no ugly noises; Katie, whistle!” She understands and responds appropriately to directions like, “Katie, keep your hands to yourself [a big one for her!],” “Katie, put your feet (or hands) down,” “Katie, calm down,” or “Shhhhh, Katie, time to be quiet.” Usually, she complies readily and is easily redirected to another activity. Occasionally, she doesn’t stop, or starts the inappropriate behavior back up within seconds.
Which naturally and logically leads to the next question!
Is she ever deliberately naughty?
Yes, Katie is aware of what is right and wrong for her to do within her sphere, and she does deliberately cross lines if she thinks she might possibly get away with it. She is naughtier for other people than for me, maybe because she has learned others are less likely to notice or make an issue of her rule-breaking.
You didn’t ask how we deal with her deliberate naughtiness, but I’ll answer it anyway. The most effective approach with Katie is to casually bring attention to what she’s doing by saying, “No,” and then to enthusiastically move her toward a better option, immediately following that up with showers of praise for not doing the naughty thing again and for making even the slightest move toward complying. She loves hearing, “GOOD listening, Katie! That was GOOD!”
Her latest deliberate naughty habit is to make wide eyes and gasp as I am putting a bite of thickened juice into her mouth. Obviously, this is problematic because she needs her fluids, and at the same time, this habit will cause her to aspirate the fluids. But I detest getting sucked into power struggles. So when she begins trying it again, I ask her to calm down and eat the right way, hold the spoon at her mouth, wait until her eyes go back to normal, and then put the bite in, praising her enthusiastically for complying. “GOOD listening, Katie! What a BIG girl! GOOD job! GOOD bite! YAY for Katie!”
This spitting stim is a no-no for Katie for obvious reasons. She went through a time when she was doing it at every given opportunity, but after lots of consistent intervention, we rarely see it anymore, even though another little girl in her class makes this noise nearly constantly. See? I told you she can learn. I’m really proud of her!
If someone says hello to Katie does she respond?
If she feels like it, she will respond to someone’s emphasized “Hi!” by saying, “Huh.” If they say, “Bye, Katie!” she will wave both hands and her head vigorously, but again, only if she feels like it just then!
If you call her from the kitchen will she come to you?
She would begin to come, but needs lots of reminders and prompts to keep her on track.
Does she speak understandable English?
Not even close! She can say a clear, “Mama,” though, which is quite wonderful to hear!
In what ways has she learned to express herself when she’s feeling unwell, ticked off, and the like?
She has a variety of facial expressions and a few vocalizations that clue me in to her emotional status. It is very rare for her to cry–maybe half a dozen times each year? She cried at school a few times toward the beginning of the new school year. We think it’s because she was expecting to see her former teacher, Mr. Allen.
She didn’t understand why we kept talking about school, and she kept going to school, but everything was different than the school experience she had been used to. And on top of all that, no Mr. Allen ever showed up. She is adjusting to her new situation, albeit with some issues I will talk about below. But she has not cried again since then.
She doesn’t tend to give much warning before vomiting, and might just begin to show a cry face and refuse her next bite and the next moment she is vomiting. I’m thankful to say that only happens a few times a year.
When she’s ticked off, she has an impatient sound that she makes now. Sometimes she also hits whatever surface is in front of her. If there’s no handy surface in front of her, she might give a quick bite to her wrist. This is also very rare, a hangover from her orphanage days. I haven’t seen it in so long I can’t remember the last time, but her teacher told me she did it one time at school last week. I haven’t seen the quick slap to the side of her own head or the hitting or headbutting of me for more than a year. So in my opinion, it is progress that her main form of expressing negative emotions is a vocalization.
How is she communicating these days (eg. signing, speech, a combination)?
She has a very few words and a very few signs that she consistently uses. In addition, she has a whole range of facial expressions, vocalizations, and body language that she uses to get her point across.
Is there anything specific or special you do at home to boost her communication?
Yes, this is my strong area, so she gets a lot of it from me. I model words for her, exaggerating my enunciation and using other tricks to clarify what I’m teaching her. I encourage talking first, so if she attempts to say a word using speech, I praise her and don’t work on teaching her the sign for that word. Her words all sound like single consonants or simple consonant/vowel combinations, and must be interpreted according to context. Her words still consist of the sounds, “B, M, P, K, H, and G.” She says “K” for the “T” sound. Her “D” sound hasn’t come back after appearing briefly a couple of years ago. She uses “K” for “Katie,” “eat,” “cake,” “P” for “paper,” “up,” “potty,” etc.
In my opinion, Katie shows a strong potential for learning and using more sign in the years to come. However, I learned something from another T21 mom that helps me to understand a phenomenon I’m seeing now and to form a realistic vision for Katie’s vocabulary potential. I’ll address it in the answer to the next question.
Has she started using any more words and/or signs recently?
Recently, I began to notice that Katie seems to have a ceiling on the number of words (signed and spoken) she is using at any given time. If she gains a couple of new ones, she drops a couple of old ones. This reminded me of what my T21 mom friend told me about her son. As she worked on new vocabulary words with him, he would learn them, then drop an equal number of others he had learned. I forget now what his vocabulary limit was, but Katie’s is very small; without counting them up I’d venture to guess there are at most a dozen words that she is finding useful at any point, counting both speech and sign, and this is the ones she uses with prompting. Without prompting, there are fewer than half a dozen.
Does anyone at her school work specifically with her on this issue?
She does receive regular speech therapy at school.
I was wondering what sort of therapies she is involved in (eg. OT, PT, speech).
She receives the three you mentioned as well as adaptive phys. ed.
How did you decide school was the right thing for Katie?
I will address this in a separate post at some point.
How is she doing in school?
She’s still adjusting to a new room and new staff, with the result that she’s showing less overall success than we’ve seen in the past. So we’ll keep troubleshooting and brainstorming that one!
Katie with her new para~
Getting over-excited and not cooperating~
Katie with her adaptive phys ed teacher~
This photo gives a good view of the Rifton chair she uses at school~
Katie with her new teacher, whom I appreciate for her conscientiousness~
Hitting a switch to make a choice~
Does she do things at school that she won’t do at home?
The opposite is the case. She is far more calm, focused and cooperative and displays far fewer stimming and other negative behaviors for me at home than at school this year. This is something her new teacher and I are actively discussing and addressing on an ongoing basis, as I said above.
If you leave Katie to her own devices does she still play with her hand or will she find something to get into?
The only time Katie has nothing to do and is not being directly supervised is in her bed at night, or on the potty if she drops her toy. (We used to put stuffed toys, a pillow, and a special blanket into her bed, but she began throwing them all out.) In these cases, she will often begin to play with her hair or more rarely, engage in some other stimming behaviors. Her other stimming behaviors are audible and I hear them and come intervene. Other than those situations, it is extremely rare for her to be left to her own devices without supervision and with nothing to do. If I cannot directly supervise her, we utilize a play yard to give her a safe play space, and she might escape from that a couple of times a year. At those times, she tends to gravitate toward 1. Anything that’s making noise, such as a CD player, air conditioner, running dishwasher, or other people’s stuff that she can make noise with, 2. People, and 3. An outside door.
What are her favorite activities at school and at home?
Oh my! This would be a long list! Trying to narrow it down, though…
Being surrounded by people,
Playing roll the ball or wheeled toy back and forth with another person,
Getting rained on,
Going anywhere, even to a medical appointment,
Doing any activity that gives her auditory input,
Doing any activity that gives her other physical sensory input, such as taking a bath, playing in the ball pit, swinging or spinning.
Is she still playing the piano?
The piano we had when we brought Katie home from Bulgaria belonged to Joseph, and he took it with him when he married Lindsay in March of 2014. We gave Katie a keyboard for her next birthday. If we put it on the floor for her, when she grows overstimulated by the sounds, she gets very rough with it and throws and bangs it around. It has to be kept secured in one spot for her to play with it appropriately.
I’m wondering about her progress with toys. I remember at first you had to work to even get her to hold or touch a toy. How is she with toys now? Does she purposefully play with toys? What are her favorite toys?
When Katie is playing independently with toys, she sits and shakes them or otherwise tries to get them to make noise, so silent toys are not her favorites. However, she will play appropriately with a few toys for a short period of time if we gather all the parts for her and help her one-on-one.
Did she go swimming this summer? If she does something like swimming that exerts her is she calmer afterward or more revved up?
Katie played in our small pool…
…and also in this big indoor hotel pool this summer.
She revels in the water, so this was definitely a favorite part of her summer!
I don’t notice any difference in how calm or excitable she is after exerting herself physically. I do notice that she falls asleep much more quickly on those nights!
My question would be if/how Katie’s sensory processing has changed/evolved over time.
Oh my, this is a big one. She has made slow and minimal progress in this area over the past four years. She has ongoing trouble with processing auditory stimulation and her intense awareness of the physical proximity of other people (who are not me). Interestingly, we can look back at photos of her early days with us and see these same responses that we were less aware of then. She was intensely aware at that point of my physical proximity to her as well.
This photo was taken exactly four years ago today~
We can help her gain cognitive control over her sensory responses, so we believe it will continue to improve. At the most challenging times, such as when she is surrounded by strangers and loud noises, we see her regress to a certain extent. A notable example is when Joe and I took her to a local baseball game, with the enormously loud noise, much of it unfamiliar, coming non-stop through the sound system. I saw this reaction in her when we took her to the aquarium last year. She was so distracted by the loud, echoing sounds and the packed crowds all around her that I’m not at all sure she actually looked at any fish. She also struggled mightily with a Sight and Sound production when we took her to an employee preview last spring. That was the last time I will have her sit through something like that on my lap! It was like wrestling a very determined bear cub for 2 1/2 hours! Stimulation like this is way too much for her and she gains nothing from the experience. She loses control of herself, has a wild look in her eye or crosses her eyes, and focuses on seeking attention from others. The more tired she is, the more extreme her regression. At these times, it grows impossible for me to get her attention to help her calm down. She pushes me away, blocks me out, and reverts to being “Pleven Katie.”
How is her walking coming along?
She has gradually gained independent walking skills, so gradually that there really wasn’t a clear line between when she couldn’t walk and when she could. Currently, she has walked 250 feet of her school hallways independently and with minor interventions to keep her from going into rooms where she shouldn’t go.
Here is a long stretch of photos from today’s physical therapy session at school. Her physical therapist is fabulous–is all business and firmly holds Katie to a high standard. She’s been working with Katie for more than two years now.
Time to get out and walk, Katie!
Bend your knee! Step down!
Katie has a habit of turning around to face the wrong way when walking up the stairs.
Not time to sit down, Katie. Stand up!
Back into her Rifton seat all by herself~
Will she still need a wheelchair after she learns to walk?
Yes, due to her cognitive, sensory, and behavioral issues, for her own protection Katie will probably always need to have a wheelchair with appropriate restraints to enable her to go most places outside our home that require her to walk long distances, sit still for long periods of time, and/or act appropriately toward people and things that don’t belong to her. Among other things. She doesn’t use the wheelchair inside our house at all.
How much has she grown in the four years she’s been home?
She was 10 pounds, 9 ounces and 29 inches long when we took her to the Tokuda Hospital in Sofia, Bulgaria shortly after taking her out of the Pleven orphanage.
She was 50 pounds and 42 3/4 inches (3 feet 6 3/4 inches) tall at her most recent Clinic visit in mid-September.
Is she overweight now? Will you help her lose weight?
Katie has the typical body structure of a child with Down syndrome, with shorter long bones and little muscle tone in her abdominal muscles to hold everything in. Add to that her tendency to slouch and her bulky small adult-sized diapers with inserts and her midsection looks rather chunky! We make sure she gets a low-carb diet packed with high-quality protein, fruits and veggies, and we feed her controlled portions appropriate for her low level of physical activity. As I mentioned earlier, she gets a small piece of cake about fourteen times a year, and that is all the junk food she is allowed. Her doctors and physical therapist are all satisfied with her current weight, as are we, and she doesn’t seem to be growing significantly this year, so other than those commonsense measures, we don’t give it any more thought.
Verity, age 5, Katie, age 13, Ben, age 2 1/2~
You mentioned incipient puberty. How’s that coming along? Any particular developmental challenges in that department?
Even though Katie is cognitively a toddler, I have decided I will not publicly discuss her puberty-related personal details, but please feel free to email me with questions if having this information would be helpful to you in some way.
Have you been able to have Katie’s teeth worked on, and have they improved?
We took Katie to a duPont dentist in January of 2012, when she’d been home a little over a month. At that time, he took fifteen minutes to chip the thick coating of calculus off her teeth. Underneath the calculus, there were healthy primary teeth.
(Did you know that Katie’s final primary tooth began growing in at age 9 1/2 while she was in CHOP between November 19th and December 1 of 2011, and that she lost a different primary tooth during that time as well? Another indication of her body waking up and beginning to grow and thrive at an accelerated rate after we brought her out of Pleven.)
In the four years since then, she’s lost most but not all of her primary teeth, and some permanent teeth have grown in. We’ve taken her for check-ups to our family dentist–he refuses to let us pay for Katie’s care!–and recently to a dental surgeon who has 30 years’ experience with individuals with special needs in order to get his opinion on the best way to address the extreme crowding in her mouth.
He said her teeth are healthy and that there is absolutely no reason to put her through a sedated surgical procedure to initiate a series of extractions at this point. He strongly recommended we wait for the remaining primary teeth to fall out and see what permanent teeth come through.
This is the photo of Katie’s lower teeth we emailed to him back in the spring~
And one of her top teeth~
What has your experience been like with the medical community?
Excellent! Of course we love all the staff we’ve worked with since first taking an infant Verity to the Clinic for Special Children in Strasburg, PA, ten minutes from our home. We also think very highly of Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware, and chose Katie and Verity’s backup medical insurance based on which carrier would work with duPont. The medical professionals we have dealt with there have amazed me with their compassion, professionalism, and willingness to go the extra mile and with their unparalleled openness to listen to and learn from my input as Katie’s mom. It feels surreal after some past medical experiences to realize that top medical specialists are altering their decisions about my child’s care after asking me good questions and really hearing what I have to say.
Have there been difficulties in finding doctors that have the necessary knowledge and experience?
It really has more to do with the qualities I listed above. A doctor who tries to make me think he is divinely all-knowing and infallible may be attempting to raise my confidence in him, but unfortunately it has the opposite effect. A solid knowledge base with a healthy dose of humility goes a very long way with me.
Have you dealt with many doctors and/or nurses that aren’t very understanding?
Not at the Clinic or duPont!
At the Clinic for the annual Down syndrome check-up and bloodwork~
I was wondering how much you, as her mom, think Katie remembers about the nightmare before she was adopted. If you choose to address this question, it’s kind of open to interpretation–consciously or unconsciously, episodic (things that happened) or implicit (sensory impressions, learned responses, etc).
If I had to guess, I would guess that she still has fleeting subconscious impressions from her past and that snippets of Pleven may visit her dreams sometimes. When she’s putting herself back to sleep after waking in the night, she still chews her lower lip and groans in exactly the same way she did four years ago. Nine and a half years is a very long time to endure such an extremely profound neglect, and of course it is especially impacting during those first formative years.
What are differences between Katie and Verity that you can attribute to her neglected early days (as opposed to just personalities) and is it possible for those differences to smooth out over time?
You know what? I’d like to give this intriguing question more thought and its own blog post at some point.
Does Katie suffer from RAD? I have worked with children who suffer from RAD and wondered how it affects children with cognitive challenges.
Yes, she does. I explained it simplistically to a young friend of mine recently in this way–
“RAD causes Katie to be confused about who the mommy is.”
The complications caused by this particular special need has impacted our family far more than I would have guessed when bringing her home. And it is exceedingly difficult to address in a child who cannot cognitively process verbal explanations of abstract ideas.
Does anyone else provide care for Katie now or are you still doing it all?
The practical realities of our current family logistics require that I still do nearly all her care when she’s not at school. On our weekly date nights, I have her fed and ready for bed before exiting the scene, so that one of the older children can walk her up to bed at bedtime. However, she is at school being cared for by others for six and a half hours each school day.
I have seen a positive difference in her over the past six months after letting go of my bonding goals for her. She still flirts outrageously with anyone who gives her direct interaction, but now she is always happy to see me coming, only rarely gets ticked off and pushes me away in favor of others, and she now comes to me for affection, giving me big tight squeezes of her own accord for up to ten seconds at a time, especially if she’s not distracted by having other people around at the time. This is in contrast to her allowing me to give her hugs for a second at most. I’ll never get tired of receiving Katie-hugs; they are just about the dearest thing in the world to me right now. Wish I had some good photos of them to show you!
What was the one thing (besides bonding issues) that surprised you about bringing Katie home and integrating her into your family? (I mean something hard or not known ahead).
If you take the impact of her bonding problems out of the picture, I have to answer that there isn’t anything else. We expected a much more challenging child than Katie has turned out to be! The attachment issues have been the hardest ones.
If you had it to do all over again, what would you do differently?
It’s more of a perspective gained through experience than a deed done differently. It is now much more clear in my mind that for those of us still on this side of heaven, love does not conquer all. It’s been a journey to truly accept that.
Recently, I wrote to another mom in the trenches–
“Keeping on loving someone who keeps on not loving you back is extremely difficult, and most inexperienced people don’t understand that. It’s a job for a warrior…
“It’s easy to feel guilty that it’s our fault that our kids are broken, especially if we receive judgment from those outside of this [post-institutional, special needs adoption parenting] world, when really the damage was done long before we were in the picture.
“We’re all broken, and this calling has shown me that more than anything else. And even the perfect love of God doesn’t erase all the effects of man’s sin on this world. It’s God who sends healing, or who chooses not to.”
And one bonus random question–
Will Katie have an Instagram to share her daily pics?
That’s an easy one to answer!
You’ll have to go on waiting for photos of this sweetie-girl to show up here on The Blessing of Verity.
Thank you so much to everyone who sent in these excellent questions! You made my updating job so much easier by doing half the work for me! I hope you all enjoyed reading this as much as I enjoyed writing it!
P. S. If I can figure out how to get back into my Youtube account, I’ll post some videos of Katie walking at school last week. But I didn’t want to hold up this post until that techie knot is detangled!