21 May 2014

Miracles in the Journey



Uphold my steps in Your paths, 
that my footsteps 
may not slip.
psalms 17:5 nkjv


Recently, someone posted a link on social media about apraxia, which is a speech disorder.  

As a mom of a special needs teenager who was adopted at age 2 1/2 years old,  I understand speech disorders.... amongst other things.  

That post, along with the fact that the end-of-year school concert and special music at church recently included this special daughter, 
had me pondering my enigma of a child who has a language disorder that crosses boundaries
 and is bundled with several other
difficulties
some of them definable and some of them not, who has a working language of approximately, 
4-6 years or 7-9 years,
 depending on exactly what you are talking about.......well......
it's just too confusing to explain,
 even with the test results in front of me and the daily interaction that I have with her.

 Suffice it to say.....a child with major language problems that include speech and comprehension....plus....
major memory problems....
plus other cognitive difficulties,

 should not be able 
to do some of the things
 that she does.  

I am not the only person who has realized this. 
I am in the company of several medical experts at a major children's hospital and 
my own family and friends who have witnessed it.  

It is the God Factor that you must look for 
when you look at your special needs child.  

Never, ever underestimate 
how He wants to shine through these children.

We began to witness the miracle of her life at the adoption.  At age 2 1/2 she was a small bundle
 of loud energy who had endured a myriad of disruptions with fetal alcohol exposure and 
chromosomal abnormalities thrown in the mix.  

Although, we did not know the extent of her problems, we knew there were many. 

It was difficult, if not impossible to tease out which thing caused which behaviors.  
Didn't matter. 

 Normally developing 2 1/2yr old children have more language than she had... 
she basically had none...
but...other than our pediatrician...

No one would listen to me...
not the genetics doctor, not the neurologist...
but, I did get a referral to speech therapy because, 

"English is her second language and she needs time to catch up."


At ages 3-4, we did speech therapy. Didn't work. 
I followed my Mom Instincts and adapted the therapy. What are Mom Instincts?  

Well,  I believe that God gives mothers an internal messaging board, so to speak, where you will know things about your child that no one else does.  I have learned over the years
 to trust these instincts.  

A praying mother will be guided by the Lord  to know when something is not right and to keep searching for answers while implementing these mom instincts.    


 She volunteered at age four or five
 to say a part in a Liberty Play our homeschool group was putting on. I was terrified. 
I told the adult in charge, that
  "of  course she could not know this, but my daughter would not be able to do it, because, she had speech disorders and memory problems." 

I was told that she was, in fact, doing it.  I was amazed. In her every-day -play- and-living-world,
 I was getting quite a bit of humming 
and moving of closed lips trying to imitate speech but without a context, even I was lost in translation; she could not do what that bit of adrenaline on stage helped her to do. 

And God gave me a first glimpse of 
what He can do with a child who, 
having no language, 
insists on speaking and being heard.

  
I spoke to the speech therapist  and told her of our adaptations of singing certain sounds 
so she could not break airflow, 
and also I also discovered that the only thing she wanted to practice saying was her 
Bible Verse for AWANA Cubbies. 

So we took her Cubbies book with us to therapy. We gave up the speech worksheets 
and trying to learn colors and 
he or she and over and under  and...
lots of things.  





After Cubbies, is Sparkies. 
In Sparkies, they really must learn the verses to get the awards. 
Sparkies starts around age five or six. 

And for a child who is barely understood by those around her.........

Well.  This was going to be impossible.

The very first verse was 
John 3:16 KJV: 
 For God so love the world that He gave His only begotten Son that whosoever believes in Him shall not perish, but have everlasting life.

You see?  
This child could not repeat
 three numbers or words back to you in any order. 

I purchased an at-home speech therapy program written by therapists and I followed my
Mom Instinct again and 
drew pictures on large paper. 
Then, we worked and we worked.  
And you know what? 
She actually learned that verse and many more. 

 She might not have been able to remember the sound of the letter "e" at age 6 or 7,  
but she could recite Bible verses.  

At age seven, I took her to a different therapist
 for another evaluation.  
She asked key questions that no one had ever bothered to ask before....like, 

"How much language
 did she have in Russia at age 2?" 

I said, "none". 

I had been to Russia, 
a few years after our adoption,
 and witnessed other two year olds 
speaking words....real ones.....
like their names....and other things.
 Not just the baby-babble and 
screeching and humming. 

She approved of my home program and assured me that I was doing everything needed. 
She mentioned cognitive testing,
 but I had not yet found a specialist
 who would order that. 

I told her that all the experts agreed 
that, "all she needed was .....time"
and.....well,
God kept leading us, and our daughter kept doing things that amazed me.




Singing.
...that gift from God that has filled my days for all of my life. 

 I remember singing for the mission circle ladies as a very young child. 

 I have been told that I was reading words from the newspaper by age four,
 which is when I began taking piano lessons. 

There are retired teachers who can remember me as that girl who always got in trouble for talking.  

So, to be a parent of a child with such a severe disturbance with language....well,
 that was not easy for me....
and I have had to dissect the art of  speech to teach what had come natural to me. 

This is not necessarily a bad thing. 
Rather, it is very humbling. 

For example, words that cannot be easily said....can sometimes be easily sung....but only, 
it seems for her, when they are His songs.  

For His Glory.  

When I  hear her next to me in church or see her singing in choir, I am amazed. 
 Because, in choir, they 
memorize 
all of their songs. 

How does one reconcile the fact,
 that a child who works very hard,  and yet, cannot remember what seems to be simple things, can remember Bible verses and songs?
  One doesn't. 
One just marvels at it.



She is in the handbell choir. 
 Playing handbells involves eye-tracking and cross-hemisphere brain work and attending
 and remembering different techniques 
that are read in music notation.  

We worked very hard at this in the beginning.  Don't let me kid you. 
It was tough.  
The beginning lasted about
two years.  
Now.....now...after five years.....
I see improvements in learning across the board, both in reading and math.  
And.  
This has led to learning something new 
that she enjoys.  

She plays the recorder.  
This means she must read music.  
Not, merely, the two notes that belong to her alone, as she does in handbells.  
No.  
She must read an entire treble staff line.  
She must remember fingering.  
And she does. 

You, not knowing the extent of her challenges, might not get the depth of the miracle. 
 But,  I do.  
As do her pediatrician and the wonderful team of developmental specialists at the children's hospital, because, they listened to me 
when I asked them for an evaluation 
when she was twelve.  

They found what medical science can find to diagnose,  and, listened and helped with what it cannot.


The miracles in my journey have been many.....and not with this child alone,  but here and now, I want to focus on......

Language

God began our universe with language.
Genesis 1:1-3  In the beginning, God created the heavens and the earth.....and God said, let there be light and there was light.



Jesus, Himself, is the Word of God.
John 1:1  In the beginning was the Word. And the Word was with God, and the Word was God. He was in the beginning with God.



Words are important.


Psalms 33:4  God's word is true, and everything He does is right.


Psalms 139:4  Lord, even before I say a word, you already know it.


 Language is important.
 Without language of any kind, 
we are cut off 
from one another.

Proverbs 25:11  The right word spoken at the right time is as beautiful as gold apples in a silver bowl.



And God..... 
He transcends the obstacles that, 
frail of body and mind, 
would be found in front of us. 

His Word is Alive.

  It is Active.  

It cuts right through 
the disorders and the disabilities and 
settles Itself right inside the human heart. 

 I have witnessed this over and over.

Psalms 19:7  The law of the LORD is perfect, converting the soul; the testimony of the LORD is sure, making wise the simple.

One day.  Oh!   
One Glorious Day,
WE  will be like Him! 

No more language disorders. 
 No more disabilities. 
Not for us, and not for our children. 

All will be perfected.  

 Isaiah 40:8 The grass dies and the flowers fall, but the word of our God will live forever.

 Take some time and recognize the miracles you have witnessed in your journey. 

 Write them down as a witness to yourself and others when you walk  the rocky paths ahead, for do not doubt it, you will walk them. 
 Then, you will be able to see how 
He upheld you all along the way.





8 comments:

  1. Praise God for your mother sense for this precious girl. I loved this. "A praying mother will be guided by the Lord to know when something is not right and to keep searching for answers while implementing these mom instincts." I have experienced this myself with my two adopted daughters from Ghana. We are kindred spirits. Go gently now, Amy

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    1. Thank you, Amy. I am happy to find another kindred spirit.

      debbie

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  2. What a beautiful testimony to God's grace and faithfulness. Thank you so much for sharing this, Deborah. It truly is inspiring. I am a true believer in those mom instincts too. We have to learn to trust them, but God truly uses them to steer us in the best direction for our children. I love that you are sharing the power of prayer and his Spirit working through you and your child. -Abby (visiting from CBCE)

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  3. I am so glad you followed your 'mom instincts.' Next to God, you know her better than anyone and it shows in the progress you've made together. What a blessing to her to be adopted and saved from her previous circumstances. It comforts me to know she is in a loving and caring home, filled with God's grace. Blessings!

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    1. Kristi, Thank you for your encouragement and help.

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  4. Wow I just have no words...except thank you so much for your words and for sharing. What an incredible God journey.

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    1. Isn't it, though? Sometimes, we need reminders from each other.

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