Over the past two years, Verity’s developmental progress slowed and her behavior regressed. I’ve referred to that here on this blog, but have refrained from specifics.
We still saw occasional flashes of ability that amazed us, such as working nine piece jigsaw puzzles herself, learning to write her name (with lots of prompts), and asking for a potty when she needed it (one time!). One time this winter, helping her to set the table, I handed her the next fork and instructed her, “Put this at my place.” She walked all the way around the table and placed the fork correctly at my place.
But proud moments like these were few and far between. More and more, she needed constant encouragement to keep her engaged appropriately in activities for more than a minute or so, rather than stimming, being wild and silly, or simply slumping, dull-eyed, with her tongue protruding. She developed many stimming habits such as rocking, squinting at lights, sucking on her tongue, chewing on her hair, and dangling objects from her hands rather than using them appropriately.
Despite the strong, positive bond between Verity and me, more and more of my available time to instruct her was spent in attempting to work past her resistance. Her list of avoidance techniques was also a long one–being silly, lovey, restless, stubborn, mad, suddenly throwing items, getting frustrated easily and quitting if she made a mistake. The cuter contrary behaviors are what earned her the nickname, “Doodle,” as in, “You’re a doodle, Verity,” from, “You’re a doodle, Mama.”
Most heartbreaking of all was that very little real communication was happening. By this past winter, she hardly spoke at all other than to echo the last several words of what we said to her (echolalia). If you would say, “Hi, Verity!” she would answer, “Hi, Verity!” If I asked her if she wanted to read “Over in the Meadow?” She would repeat, “Over in the Meadow?” rather than answering with a yes or no.
We were reminded by friends, and well aware, that this is the age when the developmental delays associated with a Down syndrome diagnosis become more apparent. In other words, the gap begins to widen. We were also reminded, and aware, that this is often the age range when autistic tendencies manifest themselves if they are going to.
But partly because of those remarkably bright flashes that would sometimes shine through, we were convinced that Verity had the potential for much, much more than we were consistently seeing from her if we could just learn how to help her in the way she most needed it.
So little Doodle Caboodle was assessed and given a full neurodevelopmental program designed just for her by Hope And A Future toward the end of February, with a stated goal to complete 50% of her program daily. Before too long, we were implementing about 90% of it seven days a week.
Within the first week, we saw her perk up–hold her head upright more often, seek out and maintain better eye contact, even across an entire room, and look bright, clear-eyed, and “present.”
We began seeing less stimming by far, as well as less frustrated “growling.”
She is more able to focus for longer periods of time, has better hand-eye coordination, and better cognitive processing skills (thinking through a sequence of what needs to happen and getting it in the right order).
In the past, if she was rocking on her horse and I told her to get down and do a specific task, she might or might not get off the horse. If she did, she would start walking and just keep on going, or else find a corner to sit in, dangle a toy, and squint at the light. She needed constant input to stay on task.
After several weeks of the neurodevelopmental (ND) program, I obtained her attention and instructed her one time, all at once, “Verity, get down off the rocking horse, push the stool to the counter, climb up on the stool, and watch Jane make lunch.” She completed all those tasks without one more reminder of any kind from anyone. Got down from her horse and walked over to the stool. Pulled it out from the wall, walked around to the other side of it and pushed it all the way to the correct counter. Climbed up on it completely independently (something she could not do before due to her terror of falling) and sat to watch Jane make the sandwiches.
Her sensory and emotional processing has greatly improved as well. For instance, her toleration of sudden loud noises or witnessing strong emotions such as Ben crying has improved dramatically.
We do flash cards with her every day, some with words, some with number dots. When I last tested her, which I do very infrequently, she chose the correct word card sixteen out of eighteen times.
She busies herself now with all sorts of activities, and we rarely see her phasing out or stimming. It’s fun to see what she comes up with. A few weeks ago, she decided that Ender must be bored without a little reading material, so she took care of that and added a stuffed animal to snuggle up to him.
Most thrilling of all has been her dramatic progress in verbal communication. Before two weeks of her program were completed, she began to use more spontaneous speech as well as appropriately answering us rather than simply echoing our words back to us.
She has vastly improved word retrieval skills and is now able to speak in complete sentences. She uses speech to make requests, answer, “No,” when appropriate and sometimes when it’s not (!), make choices, argue with Benjamin, name activities or items, and engage in imaginative play like talking to her dolls or holding pretend phone conversations.
Last night, she sat down, picked up a toy phone and dialed a number. She said, “Hello, are you coming?” After chattering for a while, she said, “Bye! I’m running now, okay?” Then set the phone back down and went to the end of the kitchen, said, “Ready, set, go!” and ran across the room.
A few weeks ago, Laura asked her to go get an item and bring it back to the couch. Verity went and picked up the item, but then climbed into her high chair. Laura said, “Verity, what are you doing?” She immediately responded with, “Oh, I see!” then climbed back down and walked to the couch.
Laura was sketching up on the hill in our woods behind our house while Ben and Verity played together nearby. After some time, Verity began walking down the hill toward the house, stating, “I’m going home.”
She has a set of flash cards that are high interest words, such as “birthday cake,” or “singing.” With these, she always quickly adds her own flourishes. For example, I might hold up and name the word, “balloon,” and rather than simply repeating, “balloon,” she says something like, “Bop, bop the balloon.” If I hold up and name the word, “banana,” she’ll say, “Mmmm, yummy banana.” If I name, “mailbox,” she’ll say, “Walk to the mailbox.”
Recently, she and Ben got into the hair elastics and dumped them out all over our bed. When I saw what they were doing, I said something like, “Oh children,” and went to help them pick it all up. Verity said articulately, “I’m sorry to making a mess.”
She can point to each day of the week on a calendar and name the days in order, very clearly, “Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday!”
With more verbal ability, we’re finally getting a better taste of her sense of humor. Her commentary on happenings around her always make us smile. We are finally learning what she’s been thinking about all this time! One of the first glimpses we had of her new ability to express herself came when I asked her if she wanted a drink and held her water cup out to her. She said, “No. Yummy coffee, please?”
I give her a number of random words quickly that she must repeat back to me in the same order. When I first tested her ability to do this using three random words, she would answer by repeating the last word I said and then adding only one of the prior words. Now she’s able to ace three every time, and I’m working on bridging her to four random words. She can handle four words if they are each one syllable.
Once Laura intended to give her four random words and accidentally said “bloom,” instead of “broom,” following it up immediately with the correct word. Verity said all five words!
Some weeks earlier, I’d given her three words, “Red, green, blue.” She said, “Purple.” “Try again, Verity! Red, green, blue.” She said, “Purple.” This went on a couple more times, until she conceded, sort of, “Red, green, blue, purple!”
Riding the Strasburg Railroad~
She can turn somersaults independently on soft surfaces now.
They love to rock and sing earnestly together on the rocking chair like this. Adorableness.
Tikky Tac trusts Verity.
It is so good to see her “reading” books again rather than dangling them back and forth.
Sweet Doodle Caboodle, how I thank God for the gift that is you.