A brighter note

April 16th, 2015

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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.

 

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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.

 

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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.

 

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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~

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She can turn somersaults independently on soft surfaces now.

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They love to rock and sing earnestly together on the rocking chair like this.  Adorableness.

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Tikky Tac trusts Verity.

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It is so good to see her “reading” books again rather than dangling them back and forth.

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Sweet Doodle Caboodle, how I thank God for the gift that is you.

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27 Responses to “A brighter note”

  1. Elizabeth says:

    I read your blog but I haven’t commented before. I am really happy for both Verity and Katie that they’re both doing so well! That’s really amazing and I’m so glad for your family after all you’ve been through.

  2. Taylor-Tots Mom says:

    Such a good update! It must encourage your heart to see (and hear) her development. Thank you for sharing those precious pictures of your “doodle.” <3

  3. Faith H says:

    Verity is so precious!! God’s blessings to you and her!

  4. Lucy says:

    Beautiful Verity! What a treasure she is.

  5. Rebekah D. says:

    Amazing! She is such a sweetheart! I love that she is flourishing! It must be a wonderful “brighter note” indeed, to see her regain, and gain, so much! I guess she just needed some new keys to unlock that God-given potential!

  6. Kathy Funk says:

    What a great update. I am so glad she is doing so well.

  7. Louisa says:

    Amazing news!

  8. Deanna says:

    Doodle Caboodle is a great nickname! She is sweet. I am so happy to read this post!

  9. Joseph says:

    This is awesome!

  10. Kim says:

    Rejoicing with you and thanking our Father for His work in your lives!

  11. Phyllis says:

    Such an encouraging post. We love your family…

  12. Melissa says:

    Verity is amazing! It’s great to hear that she is not only regaining ground but growing…and growing some more! She’s quite the little lady these days.

  13. Barb says:

    In the picture of Verity and Ben – you can tell they are siblings. :) I’m so glad to hear that she is doing so well. It’s always great to try something new and see good results.

  14. SleepyMom says:

    That was such a fun and informative update! I empathized a lot with the only completing the first part of directions and then wandering off. :) It must be quite a joy to see Verity blossoming and engaging her world. So happy for all of you!
    I would love to hear more about her customized program considering the amazing results you’ve had but on a more specific note, I’ve often wondered how others use flash cards. I read a few years ago an article showing that teaching a child with down syndrome a couple hundred sight words would greatly enhance their ability to learn to read later. I was fascinated by this but couldn’t get my son (who I suspected would have trouble learning to read based on not being able to learn the ABC song) on board before kindergarten as he is stubborn as the day is long. (he, in the pyschologist’s words, is “extremely quirky” – if you were going to put on labels they would be ADHD, sensory processing disorder and auditory processing disorder). Sure enough he’s had trouble learning to read because phonics is beyond him. Despite being very “smart” he just can’t hear subtle sound differences and still can’t figure out things like rhyming words, but sight words he can learn! So I went back to that original idea of learning lots of sight words before worrying about phonics. We got 607 flashcards (Snapwords from Child 1st) that incorporate a picture into the written word to make it visually stickier. He loves the picture words, but I’m still not sure how to teach flash cards. Do you go over them once a day, 10x a day. Do you say the word first on day one or for weeks before you ask them if they know it? I’ve been warned that with extreme right-brained, visual learners you want to be careful not to have them guess words as they will often be incorrect and then it kind of sticks in their head that way. Anyway that long rambling comment was really to ask how often and in what way do you go over flash cards with Verity?
    I pray that her wit continues to shine and keep you all surprised and smiling.
    P.S. I started doing something similar to the repeating back random words thing but with numbers. I’d read that ideally your short term auditory memory should be 7 numbers long to really be able to fluently read using phonics. My sons was only 4 numbers long at age 6.5, so no wonder he couldn’t do phonics or follow directions! We are already up to 5 numbers that he can repeat back in order and he likes playing the game, so you never know phonics and multi-step directions may be in our not-too distant future after all. I may have to try the game with random words now too.

  15. Abbie Caple says:

    I love the static hair! Also, I want to swing in that swing. =)

  16. Dana says:

    beautiful, precious!

  17. Heather says:

    Thank you for this sweet update on Verity. It sounds like she is doing very well! Keep up the good work!!! :)

  18. TJ says:

    Could you give more information about the Hope and a Future place. I followed the link, and they don’t have any locations near me (Colorado). I am wondering how much it costs, and what the process is. If for instance we travel to one of the locations how long would we have to stay there before we could go back. I asked someone a couple of questions using their contact form, and they say that they can do Skype evals, but do you think that doing it via Skype is plausible based on what Verity’s eval involved? I am very interested because that is simply amazing progress!

  19. Diane says:

    I love the stories of the auditory processing games. We also use Hope and a Future for an ND program for our daughter. Your story reminds me of when we were working on 3 words. We said, “cow, dog, pig” She didn’t respond. “cow, dog, pig” No response. “cow, dog, pig”. She responded, “No cow, no dog, no pig!” A few days later, she overheard her brother working on a spelling list and correctly repeated the spelling of a 6 letter word after hearing it only once. She can’t consistently get 6 yet, but it is exciting to see the growth that comes with each increase in sequencing.

  20. sarah says:

    There are so many things i adore about Verity! okay one: she reminds me so much of my daughter! now my lil one does not have downs, but oh; i don’t define your lil one by that. Dang! i want a play date!

  21. Jamie Wooddell says:

    I am so excited for Verity! We worked with Linda when we first brought Zeb home almost 4 years ago! His improvement in the first 4 months were huge! We haven’t been for an evaluation in quite a while due to life changes but I am such a fan of ND. Zeb isn’t quite the talker Verity is, but he is currently going through another language explosion. We are so proud of his progress.

  22. Susanna says:

    TJ, I will also copy, paste and email you this reply since you may not see this here.

    The fees Hope and a Future charge are all listed on their website.

    We traveled an hour and a half to the closest HAAF evaluation site, and the eval took about two hours. Linda comes to that location every four months from the Midwest, so Verity’s first re-eval is scheduled for June. They are also very accessible by email if a family would run into difficulties with the program. Plus there’s a monthly report form to fill out, which they explained is optional. If we were so far away from an eval site that we just couldn’t swing the travel, we wouldn’t hesitate to schedule an eval by Skype.

    I actually went to the eval site a few days ahead of time to attend a seminar on the neurodevelopmental approach and considered it worth the time. I also had a chance to connect with Linda then, which was helpful for both of us, I think. I have found her to be invariably personable and encouraging.

  23. Susanna says:

    Diane, your story made me laugh! That sounds so much like Verity! Love it!

  24. Susanna says:

    SleepyMom, I’m planning to copy, paste, and email this to you in case you don’t see it here.

    We have three distinct sets of flashcards right now.

    One is called “high interest words,” which I just print in black marker letters on posterboard. They tend to be longer words or multiple words, names of things she loves, like “Signing Time” or “orange juice.” I give her one or two new words each week.

    The second set you can see in the photo with the laminator, and right now these are shorter, more functional words to prepare her for reading. We weren’t given any assigned words at all by HAAF; I came up with them myself. I give her two to three new words each week, as instructed. This is a much bigger stack of flash cards now.

    The third set of flash cards is her number dot cards. Black Avery sticker dots randomly placed on blank white 4×6 index cards and laminated, six cards each for zero through three. We actually went ahead and made cards up to ten, since we had the materials set up and it was super simple to do. But her assignment is for zero through three this time.

    The frequency and duration of each activity on her program is assigned by her evaluator, Linda Kane.

    Once a day, I run through her high interest words once, shuffle them, and run through them again right away.

    Twice a day, I run through her number dot cards once, shuffle them, and run through them a second time.

    Twice a day, I run through her review word cards in the same way, and twice a day, through her new word cards.

    Each time, the flash cards take only a couple of minutes. We’re to give her a break of at least ten minutes between similar activities to ensure it’s the most effective. There are a few two-person activities, which altogether take up less than ten minutes. Laura and I do these with her right after her morning breakfast/potty routine, before Laura goes on with her school day. I try my best to get the bulk of Verity’s program done by mid-afternoon, because she grows less cooperative and less able to focus as she grows more tired, and it’s therefore less effective. If I don’t have it quite finished by 3:40 pm when I get Katie off the bus, Laura finishes it up with her if possible. If not, I let go of it and don’t stress about it.

    For all Verity’s flash cards, I sit facing her where I can see her eyes, and hold each card up in turn and name it quickly while her eyes are focused on the card. I only test her maybe once every other week. Testing is only for my own curiosity, and is not part of her program. Sometimes I hold up the next card and say nothing, waiting for her response. I might do that three times during the whole session. Sometimes I tell her we’re going to play a game, and hold up two cards and tell her to point to _____. She, of course, does much better with this multiple choice activity than with the test in which she also has to retrieve the correct word from her memory and say it.

    I hope this is helpful. It sounds like you are doing a really great job with your son!

  25. Jessica says:

    What happy news and beautiful photos of your Verity! My heart ached for you reading posts from last year when you felt that Verity was withdrawing and not thriving. This program sounds wonderful. How did you hear of it, and how are the activities different from what you were already doing with her? If that require a lengthy answer please don’t feel that you must reply, as I can see that you are very busy!, I am just curious and interested as a former teacher turned homeschooling mama. God bless you and your family.

  26. Aunt Erma says:

    Dear Susanna, I really enjoyed reading about Verity and am glad for the progress she is making. Thanks for sharing. Blessings to you and all your children. I know there are challenging days ahead for you, but God is with you, and in you, to make you a joyful overcomer. Love always, Aunt Erma (p.s. I’m going to be a great grandma in September thanks to Stephanie and Ozzie.)

  27. Gina in Spain says:

    YAY VERITY!!!!!

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