How’s Verity doing?
Why don’t we see more pictures of Verity?
How has the adoption affected Verity?
I miss seeing Verity!
Is healthy and strong. Dr. Chowdhury was very pleased with everything she saw during Verity’s most recent heart echo.
Is extremely far-sighted, her left eye more so than her right. She continues to leave her glasses alone unless they need to be cleaned or she is ticked off about something.
Is also excellent. She has had only two sicknesses since her birth, unless you count the fever she spiked when she was cutting several teeth more than a year ago. She has never had an ear infection.
She takes a low dose of chewable thyroid medicine first thing every morning, a wee dollop of Colace daily for constipation, and a small amount of a mild, over-the-counter antacid for reflux. We thicken her liquids, as she still aspirates thin liquids.
Is following the growth curve for a typical child without Down syndrome. She is wearing a size 2T. Interestingly, she’s following the growth pattern of most of our other children. At her most recent check-up, Dr. Strauss was very pleased with her height to weight ratio, among other things.
Her sleep habits
Are exactly what our other children’s were at this age. She sleeps soundly for about eleven hours at night, and takes a good two to three hour nap in the afternoon.
Her eating habits
Are dainty, like her mother’s. She eats all sorts of foods with all sorts of textures, but fills up fairly quickly.
Here she is eating a blueberry she snatched off the edge of the plate. After this initial grimace at how icy cold it was, she gobbled the rest up quickly.
Is far ahead of where I would have expected it to be at age two. She understands what the potty is for, and usually uses it as soon as we set her on it. She says, “My potty.”
Is consistently cheerful, somewhat serious, with a generous dash of playfulness and humor. She is very opinionated and expressive, and very motivated to learn. She is always affectionate with us, and always reserved toward people outside our family.
Is like that of any of our other children at age two. Miss Marcia, her occupational therapist, tactfully describes it this way, “She purposefully refuses to comply initially but then will try with an adult request.” I found This Article very helpful when I read it early in our journey with Verity. I have her practice good manners and divert her from poor behavior as best I can. I am also very aware of the fact that she may attempt to use the “cuteness factor” to distract us from making her work hard, as I have been warned by those who have long experience educating children with special needs. I don’t ask her to do things if I’m not willing to follow through to have her do them.
Verity is much more active than she has ever been before. It can be very difficult to get good photos of her because she is so rarely still.
This may help to explain the seating arrangement in photos like this. Katie is much slower-moving, but Verity can be lightning-fast now.
She was recently assessed by her three therapists, Miss Marcia the occupational therapist, Miss Karen the physical therapist, and Miss Julie the speech therapist.
If you can picture a bell curve of typical development, nearly all children will fall right in the middle between a standard deviation of -1 on the one side and a standard deviation of +1 on the other. In order to receive Early Intervention services, a child must fall below a standard deviation of -1.5 or have a diagnosis which qualifies him or her.
We found out this past week that Verity’s overall score in five areas was a standard deviation of -.87, or not quite -1.
She was assessed in five areas–
Cognitive, in which she scored -1.53
Communication, in which she scored -1
Social & Emotional, in which she scored -1
Adaptive, in which she scored -0.3
Physical, in which she scored -2
So if it wasn’t for Verity’s diagnosis of Down syndrome, she wouldn’t qualify to receive occupational or speech therapy through the Early Intervention program.
I found the evaluation process fascinating, and we are immensely proud of her and pleased with how well she is developing. If she continues at the same rate, it bodes well for her ability to be independent as an adult.
For the sake of record-keeping, may I present summaries of these five areas, written by her therapists, with notes from me as needed. (I deleted long lists of items, but this will still likely be enormously boring to all but a very few people!)
Verity recognizes herself as the cause of events, experiments with variations of causal behavior, reaches around a barrier to get a toy, shows an interest in age-appropriate books, stacks four blocks, pulls a cloth to obtain an object, responds to the concept of one more, is able to give three objects on request, finds comical, unexpected or unusual events humorous. She is beginning to nest objects inside another and is beginning to place a circle and square into a container without assistance. She physically explores her surroundings and imitates simple facial gestures. She can occupy herself for at least five minutes, attends to a game of peek-a-boo for five minutes, uncovers a hidden toy, points to objects in a book, finds an object hidden under two cups, and selects the hand hiding a toy. [She is beginning to demonstrate imaginative play, and can now follow two commands given quickly, such as, "Verity, take your glasses off and put them in my hand."] She is not yet repeating four digits, reciting lines from a book or movie or answering simple, logical questions such as why do we have clothes or name the colors red, green or blue.
Verity participates in play routines with another person for at least one minute using appropriate eye contact, imitates words, and produces different types of consonant vowel combinations. Verity does use a combination of signs and words and is now combining two signs such as “drink please” without prompts. She is spontaneously using the following signs: [eight total]. She is spontaneously verbally using approximately 29 words [now 31 words] in the appropriate context and using several phrases such as “Hi Daddy,” “night night, Mama,” “I got you,” “I did it,” “I love you,” “Happy birthday, Verity.” Mom reported she is able to imitate [or approximate] any word they present to her [with patient effort! for instance, "cupcake' came after more than five minutes of working with her, and her first attempts came out as "pu-cake" She imitates with prompts, but does not have a lot of spontaneous speech]. She is able to approximate “I’m Verity” when asked her name. She is able to point to family members on command, imitate alphabet sounds up to /n/ [now can imitate all alphabet sounds], identifies several body parts beyond her eyes, nose and ears, such as feet, knees, toes, and hands [neck, chin, belly, head, hair, arms, hands, fingers]. She follows commands with gestural cues, identifies photographs of familiar objects, identifies familiar objects from a group without gestures, follows routine, familiar directions, identifies things you wear, and understands the verbs eat, drink, and sleep. It was informally noted that her response time to one step commands is decreasing. She is not yet making inferences or understanding analogies, asking questions that begin with who and where, or naming her own creation.
Social and Emotional Development
Verity is a very social little girl who enjoys being with her brothers and sisters in all of their activities with this very active family. She recognizes herself in the mirror, expresses affection by hugging, patting, and resting her head on her mother’s shoulder. [She has begun kissing without prompts at appropriate times.] She shows appropriate affection toward her family members. She purposefully refuses to comply initially but then will try with an adult request. She responds positively to adult praise. She is starting to wave “hi” and “bye-bye” when requested by an adult. She laughs at silly things her brothers and sisters will do and she enjoys having her family members read easy stories to her.
In the area of fine motor skills, Verity typically uses her right hand for most of her feeding especially when she uses a fork. She does use both hands in play and she is also showing bilateral usage as she will hold items in one hand and “do” the activity with the other hand such as holding a small plastic jar with her left hand and putting Cheerios in the container with her right hand.
[Or holding a bag with one hand and unzipping it with the other hand, then reaching in to pull out items.]
She uses an extended index finger to point, independent of her other fingers. She shows mature grasp and release as she will extend a toy to a person and release it from her grasp. She can throw a ball, removes forms from a board and purposely will drop items off her high chair tray or into a container. She will dump a raisin from a bottle and put rings on a post. She will often use a two finger and thumb grasp. She will occasionally use a neat pincer grasp to pick up a small object. [She is using the neat pincer grasp more now as we have been pushing it heavily, but she'll still use the easier method when given her choice.] She can make imitative strokes of vertical and horizontal lines and circles using a crayon. [She can correctly place small magnets onto the refrigerator, manipulating and turning them so that the magnetic side contacts the refrigerator, then taking her fingers away and leaving the magnet attached.]
Gross motor: Verity uses crawling as her primary means to move about the house. She will also cruise along furniture and will take steps with hands held.
She can rise to stand without support and will maintain standing for a period of time while playing with a simple object. She is starting to correct her balance when standing. [We did tons of weight-shifting activities with her over the past few months in preparation for walking. This mostly involved having her do lots of fine motor activities, like putting bead necklaces on, while standing rather than sitting. We also had her reeeeeeach as much as possible while standing, at first with her feet positioned as you see below, and eventually with one foot positioned further forward.]
She has to pull the clothespin off the rim and put it into the jug.
She is working on taking independent steps and may occasionally take one when prompted. She will crawl up stairs. [Obviously, this assessment took place before Verity began taking independent steps. If she had begun walking just a few weeks earlier, she would have scored higher on the physical assessment, as that pulled her score down a good bit. However, contrary to what one may expect, we were not in a hurry for her to walk, as crawling appears to be valuable for the brain, and we know that once she's solidly walking, she will no longer crawl. Also, after lots of hard work she's getting adept at going stand-to-squat-to-stand.]
Verity is a good eater and eats a variety of tastes and textures. She can use a fork to feed herself as she holds and pokes soft foods and brings the fork to her mouth. She mainly finger feeds herself and is starting to show signs of rotary chewing. She is independent in drinking from a straw and this has been encouraged to help with her ability to increase her lip closure and use her muscles around her lips.
In this photo, she is finishing her thickened lunch drink before lying down for her afternoon nap. You can see by her eyes and the drips running down her chin that she is tiring out.
She can take sips from an open cup with an adult assist. Verity has many opportunities to encourage dressing and undressing as she will play dress up using bigger clothing. She is able to remove her socks and shoes and will help to pull her shirt and pants on and off. Her family has been working on self dressing with Verity as she stands with an adult assist and will do a weight shifting to pick up her feet and pull her pants up.
[This is the over-sized bag lady outfit we use to work with her on dressing herself. Success is vital to motivate her to be further successful, so we pick up where her efforts leave off, giving less and less support as her skill grows.]
She is independent in putting her glasses on and taking them off. [I have made this increasingly more challenging for her, until now I can hand them to her folded, and she can unfold them, turn them over in her hands until they are correctly positioned, and put them on. She also pushes them up if they slide down.] She enjoys bath time and will help to wash her body parts and enjoys her bath toys.
Why is Verity doing so well? We’ve had many people guess at the reasons. As with all children, the answer lies somewhere in the mysterious combination of nature and nurture. We’ve been told to expect the gap between Verity and her typical peers to widen as she grows older. Regardless of this, based on the extraordinary accomplishments of some other people with Down syndrome, we will continue to set the bar high for Verity.
There is a range in cognitive abilities among people with Down syndrome as there is among people without Down syndrome. We joke about Verity having “Musser Down syndrome,” because she inherits academic brightness from both sides of her family. Apparently, she seems more delayed to us than she actually is because our other nine two-year-olds were significantly ahead of the curve, especially in the communication and cognitive areas.
It’s impossible to definitively state that anything we’ve done to help her is The Cause of her current flourishing. At the same time, we have taken many steps to be proactive in supporting her development. Taken all together, we assume they’re helping and not hindering, at the very least. I’ll list them here for other parents who are, like me, constantly gleaning for ideas. These are not to be taken as arrogant recommendations from parents who think they’ve arrived.
So the following, in no particular order, is just a recounting of what we’re doing with Verity that may be of interest to some other parents, with the hopes that they may help someone else as others have helped us:
~She listens to music of the highest excellence, nearly all from the Baroque, Classical, and Romantic eras, both from recordings as well as played on the piano by her oldest brother, Joseph. From the time of her birth, we have played Bach for her as she falls asleep. Truly excellent music stands on its own merits, and it’s just a bonus for Verity that it appears to help organize the brain.
~She gets next to no screen time. Our ideal goal for her is no more than half an hour per week. We do this to help develop the part of her brain that governs her attention span. And she does have an attention span that is appropriate for a child of her age without Down syndrome.
~We are a word-rich or language-rich family. Verity is surrounded by conversations and books. Additionally, I have been told repeatedly by her speech therapist that my natural mode of speaking to Verity is exactly what she needs it to be. Knowing that speech will be a challenging area for Verity, I was already very consistent about working with her in this area. And then laryngitis taught me the unforgettable lesson that people stop talking to those who don’t talk back. We naturally interact less with those who don’t respond immediately or in a way we understand or are comfortable with. So I am all the more determined to talk, talk, talk with Verity and Katie in the way that is most effective for them.
~From the time of her birth, I’ve considered all Verity’s awake time to be potential developmental time. If she is not being challenged or working at something, I see that as lost developmental time. We all know that we must not let Verity phase out, and will automatically intervene if we see her doing that. I am constantly aware that she can lose it if we don’t make her use it, even if it’s just having her chew on a chewy tube and look at books during the church meeting.
~She is constantly surrounded by activity, and has many helpers who love to teach her or play with her. The opportunity to interact closely with a dozen family members of various ages is a definite benefit to Verity, and all her therapists have mentioned this as a plus for her as well.
~As a governing philosophy, I consider it better to prevent than to cure whenever possible. I do my best to prevent Verity from developing poor habits in the first place. For instance, I have both girls wear Hip Helpers all the time. Hip Helpers keep their legs in line with their hips rather than “frog” outward (excessive hip abduction), which helps them progress properly in their gross motor skills.
~I guard her health, because sick time is lost developmental time. We don’t give her the standard American diet. We don’t give her dairy products (can contribute to upper respiratory congestion) and only trace amounts of refined sugar (can be detrimental to the immune system). She ate a totally worthless cupcake on her birthday.
That was the first time she ever ate junk food, she won’t get any more until her next birthday, and I don’t feel the slightest bit of compunction about that. With her small appetite, every bite she eats must count. We give her high-quality protein, the most nutrition-packed vegetables, and whole grains. Dessert is fresh fruit of all kinds.
We add high-quality coconut oil, probiotics, flax seeds, and a drizzle of honey to her breakfast oatmeal. She drinks homemade almond milk mixed with commercially-prepared mango smoothie. We add the contents of two capsules of ginkgo biloba extract to her first drink of the morning. We put several drops of grapefruit seed extract in every drink. We give her 2000 IU of vitamin D3 daily, as well as a Nordic Naturals fish oil softgel.
~We don’t do as much formal therapy as you might assume from reading this post. Especially during the good weather, I relax a good bit with formal therapy time during the day in favor of outdoor activities like swinging at the playground, finding pebbles in the creek, or exploring in the woods with her siblings.
~But I still try to fit all kinds of learning into normal life activities, and teach, teach, teach as much as possible.
Like practicing ahead of time so she was ready to blow out her birthday candle.
Or taking flash cards along to Black Rock Creek. Verity does love her flash cards.
“Verity, what’s that? (pointing to fish) Verity, look at the FISH. FISH. The fish are SWIMMING in the WATER. Swish, swish, swish, go the FISH in the WATER. (while signing “fish”) POINT to the FISH, Verity.”
~When we choose her toys, they’re always items to help motivate and help her in some area of her development. Here’s what we picked out for her birthday–
She’s working on a proper grasp of writing and eating utensils~
For imaginative play~
Portable, all-in-one, no-mess drawing practice~
More imaginative play~
Fun motivators for oral motor workouts~
Yes, she did blow that whistle!
The ball and lightweight bat provide something new to do while practicing balance and weight-shifting. The bucket and shovel are for…
…a sand and water table that her daddy lovingly made for her birthday…
…along with a stove Daniel made for her imaginative play, the doll bunkbed he made for the two older girls years ago, which they have now bequeathed to Verity so she can tuck her baby in for the night and put away her accessories neatly, and a two-sided easel for more balancing and weight-shifting practice!
Have you ever read the very first post on this blog?
How I grieved after hearing about Verity’s Down syndrome?
“I had never felt this kind of anguish before, this anguish of knowing my child would be rejected, knowing that she would suffer as a little baby in ways that none of the rest of us have ever had to suffer.”
I was wrong.
It’s been said that it’s understandable to grieve when you find out you’re getting a child who is different from the one you were expecting.
I think that’s mincing words.
When I expected to receive one baby, and found out we had two babies on the way instead, I didn’t grieve, I rejoiced.
Why did I grieve when I heard Down syndrome?
Because I thought Down syndrome was something to be sad about.
Could I have been more ignorant and more wrong?
In my grieving, ignorant wrongness that night, never would I have imagined this two-year-old morsel…
…inexpressibly and irresistibly sweet, filling our hearts to the brim and spilling over, stunning us with what she can do…
…and making us feel sorry for every family who hasn’t been so privileged as to receive a first-best, extra-best prize like our Verity.