A brighter note

April 16, 2015 at 6:09 PM by Susanna

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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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Till light arise

April 16, 2015 at 12:14 AM by Susanna

 

 

I wait for God, the Lord, and on his Word

My hope relies;

My soul still waits and looks unto the Lord

Till light arise.

I look for him to drive away my night,

Yea, more than watchmen look for morning light.
~The Psalter, 1912

 

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From there, it was a slow slide down into the night.

That glimpse of God’s enormous and eternal goodness and sovereignty contrasted with my mere speckness was comforting for a brief time.

Then fear, who crouches on the other side of my back door, knocked again.  I opened the door just a crack, and quick as a wink, depression wedged his foot in and started fast-talking me, louder and louder, until he was shouting abuses and accusations in my face.

What difference does it make to God and His grand eternal plan whether the little speck of dust that is you belongs to Him or not when all is said and done?  From all I can see, you don’t come close to qualifying.  Ooh, ooh, ooh, you’re doubting!  Just proving my point!  You’re on the outside looking in and there’s nothing you can do about it if God decides He never knew you!

 

And then my friend said goodbye.

Just so, so terribly wrong and sad, and once the tears start, it all pours out all over again, all the tears for all the heartbreak…excruciating…

 

It didn’t take that much to make me lose my emotional bearings.  But this time I didn’t pull away into a corner and fight alone.  God gifted me with a husband and a few chosen sisters who don’t write me off when I’m real with them.

 

I know what is true about Him and His character from His word, but I battle and battle and battle to believe that I’m really His child and it applies to me. 

Maybe I’ve been fooling myself all these years, thinking I’m His child when I’m just enjoying the life He’s given me and feeling good, able to say all the true things because of the years of familiarity with His word and thinking I know Him.

The whole thing is getting harder, not easier, as time goes on, because I’m more and more tired of the fight and feel like others will get tired of me being a needy taker and why don’t I just buck up and get on with life now.

 

Those who counsel me in love all agreed.

That’s the depression talking.  It says the same thing to every child of God.  It’s lying to you.  Don’t listen to it.  

 

 

“Go to God and say, O ‘do as thou hast said.’

If you can see any word of promise suited to your case and to your need, then put to your hand by faith, and lay hold upon his word.

Take him at his word, and put him to it, saying, Lord, ‘do as thou hast said.’”
~Ralph Erskine, “Faith’s Plea Upon God’s Word”

 

 

On Good Friday, I cried aloud to Him.

need to know what’s real!  Jesus!  Do what You’ve said You would do!  Show me what’s real!

 

On Saturday, the day before Easter, He replied,

Most assuredly, I say to you, unless a grain of wheat falls into the ground and dies, it remains alone; but if it dies, it produces much grain.

He who loves his life will lose it, and he who hates his life in this world will keep it for eternal life.

 

I’ve been terrified I’m losing my life on so many levels, but Jesus said I must give it up in order to bear fruit, and hate it in this world to keep it for eternal life.

The reason it feels like I’m dying is that I am dying. This is what dying feels like.  

 

And then, on Easter Sunday morning, He pierced me even to the division of my soul and spirit and reassured me with His life-giving balm,

All that the Father gives Me will come to Me, and the one who comes to Me I will by no means cast out.

 

 

My daughter, you do not come into judgment.  You have passed from death to life, and you will by no means be cast out.

 

 

I will be glad and rejoice in Your mercy,
For You have considered my trouble;

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You have known my soul in adversities,
And have not shut me up into the hand of the enemy;

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You have set my feet in a wide place. 

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Blessed be the LORD,
For He has shown me His marvelous kindness in a strong city! 

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For I said in my haste, “I am cut off from before Your eyes”; 

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Nevertheless, You heard the voice of my supplications
When I cried out to You.

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The LORD is near to those who have a broken heart,
And saves such as have a contrite spirit.

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Many are the afflictions of the righteous,
But the LORD delivers him out of them all. 

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A big thank you to John Michael, age nine, for kindly taking these photos on Easter Sunday.  I love you, my son.

If any of you have also battled the darkness, you may know just what I’m talking about when I say that I love David the Psalmist as a brother in arms. My counselor sent me home from my last counseling session with the assignment to write up a very specific list of strict do’s and don’ts for myself for both acting and thinking. God was faithful when He gave me strengths, and He is faithful now, when He is stripping those strengths away from me and making me experience how utterly frail and needy and dependent I am on Him. My trust in Him has always been one of the strengths of my life, and He has seen fit to show me my inability to do even that. To make me know through experience what I knew in my head–my faith in Him comes wholly from Him.

Next planned post–an update on Verity that’s as small and sweet as she is.

 

 

 

Ninth Annual Big Families and Friends Picnic

April 13, 2015 at 11:31 PM by Susanna

Yes, we have the same park pavilion reserved for Memorial Day Saturday again this year.  That’s just under six weeks away–Saturday, May 23rd, from 10 am until dusk, with the main meal at noon.

There are no changes in the details from previous years, but do feel free to email for more information:  susanna@theblessingofverity.com

We’re looking forward to seeing many old and new friends there!