11/21/13 - Thanksgiving

Well, I said I wouldn't post anything for a year unless something dramatic happens. Today Alexandra got removed from Knox County School's Hearing Services because she no longer qualifies. In other words, she is hearing TOO WELL to need help. Now, that is something for which to be Thankful!!!!

Tomorrow we finish up at UT's Hearing Services, as well. We couldn't be happier with her progress this past year. We are truly blessed!!!

On a side note,  she won a Gold Medal today in Special Olympics Basketball by winning all 4 games!!!!!!!  Tonight at Young Life she was famous.....she was asked, "Didn't you play basketball today and win???"

One year ago....

One year ago today Alexandra had her cochlear implant. It has been a year full of blessings and much progress. Because of her age when she had the implant, her speech (though better) is still difficult to understand. However, we knew that going in, and we are blessed with her hearing restoration. This will make her life so much easier forever.

We are still continuing speech therapy at UT until the end of the year, and will also work with her at home as long as we see improvement. The implant really did change her life. She is much happier and although her autism limits interaction to a certain extent, she is more sociable than she has ever been. 

I will only update this blog yearly henceforth unless something major happens. Until then, thank you for sharing our journey.......

In reflection........I posted 52 blogs this past year. It is encouraging to me to read about our journey. God is Faithful and we are so Blessed!! 

You may not know what God has planned for your life at this moment (would we have knowingly chosen to adopt an autistic daughter--probably not), but as it says in Jeremiah:

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call on me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart."

And that is what we try to do..understand that God knows what is best for us and seek him in all our decisions. What he has planned for us is better than we could plan ourselves.....

7/17/13 - Laughter

I was working on various grammar skills with Alexandra today such as is, are, ed, etc. One in particular was adding ing to words. A picture showed a woman taking bread out of the oven. Alexandra's response was, "She is ov-ing." Love it!!

Update - July 4th, 2013

There are four stages of auditory training in post cochlear implantation:

1. Detection (of sounds)
2. Discrimination
3. Identification
4. Comprehension

Three weeks ago I was told by Alexandra's Speech Therapist that Alexandra has reached the final stage of Comprehension. That is such great news. She has worked so hard. Having hearing makes life for her and us so rich. We will probably cut back some with the formal speech therapy, but I will continue to work with her at home and continue to incorporate learning in her everyday life. It's like having a child who is just leaning to talk, but instead of it happening naturally, we have to teach her everything because she has missed so much and she is 17 not 2.

Here is one example of the challenges she faces in learning new vocabulary. To Alexandra scuba diver, screw driver and school bus driver all sound the same. She knows what a school bus driver is, so when I say unknown words, she thinks school bus driver. So, comprehension is based on 1, 2, and 3 above. The brain is so amazing. God is more than amazing.

At the moment she is out on our screen porch watching, but mostly listening to the July 4th fireworks. There are so many things we take for granted that she is enjoying for the first time. She is a Happy, Happy Girl!!!!

Update 6/10/13

I am still amazed at how great Alexandra continues to do. Her reading has improved so much. Her sentence structure has improved, as well. She initiates conversation, which never happened before unless she was hungry. She is so aware of what is happening around her. 

As far as speech therapy goes, we continue to practice daily. I try to come up with different ways of working with her, but it is hard. I don't want her to become bored. We resumed therapy at UT last week after 5 weeks off.  She is wearing her implant and her hearing aid all the time now. Previously, she did not wear her aid during therapy. I like this much better. It seems easier for her. Sometimes she likes to turn everything off, but most of the time she stays turned on until bedtime.

At the store today a baby was crying. She grinned from ear to ear because she heard it. The great thing was, I never saw the baby. It must have been halfway across the store. 

We are almost 8 months from her turn on date. Life is so much easier for Alexandra and us as a family.  We are so thankful!!!

What does Simon Peter and Alexandra have in common? - 5/7/13

Another month and we are still working on growing in knowledge. We have finished up speech therapy at UT until June, but we continue practicing and learning something new almost daily.

Today we had a real interesting evening. Alexandra came home asking about Jesus on the cross. We have talked about it before, but she was more into details of the nails, crown of thorns, and the hurting Jesus suffered.  I  also managed to talk with her about the why. She wanted to get down the Resurrection Eggs and so we did. When we got to the part where Peter cut off the Soldier's ear, she could really relate. After all, her ear was partially cut off during her implant and she has seen the scars. She knows just as Jesus healed the Soldier's ear, she will be made whole in Heaven.  No scar, no implant, no hearing aid. My sweet girl continues to amaze me.

4/5/13 - A Grateful Mom

Today I am feeling so humbled and thankful for all of the people who work with my Alexandra. Not only are there great doctors and dentists in her life who are not intimidated by special needs children, but also many who choose to work with special needs kids as their vocation. Alexandra has had so many wonderful special ed teachers, TA's, audiologists, hearing, speech and language therapists. There are also regular ed teachers who open up their classrooms to her and work with the strengths she has (such as running, art and PE teachers), peer aids who give of their free time, Young Life leaders who include her, and the list goes on and on and on. One particular person, Shari Gentry Cate, has been part of  Alexandra's life almost as long as we her parents. How can we even begin to express what so many of you mean to us and her. Alexandra may never look at the people in her life and show gratitude. It's part of who she is--the autism in her. However, as her Mom, I say Thank You!!!!  To everyone who has given so unselfishly of themselves, I am grateful beyond words. I am reminded of a verse in Hebrews 6:10. "God is not unjust; he will not forget your work and the LOVE you have shown him as you have helped his people and continue to help them." May God shower His blessings upon you beyond measure.

3/29/13 - Update this Good Friday

This Good Friday...."Thank you for the cross, the price you paid for us. How you gave yourself for us completely.  Precious Lord! Now our sins are gone. All forgiven, covered by your blood. All forgotten."    

We try to mix up our speech therapy so it doesn't get too boring.  Jerry suggested we create a story to help with her reading, language structure, as well as vocabulary.  She is such an ASL girl--leaves out "the, as, is, and s" etc., all the time.  Not sure she will ever incorporate them into her everyday speech.  Still we count out blessings daily. Here is a social story we are working on:
                               
                      How Alexandra gets ready to run.

The first thing I do before running is to put on running clothes. 

These are shorts, jogging bra, shirt, short thick socks, and running shoes. 

I put my long hair in a pony tail. I also put on my implant and hearing aid, so  I can hear traffic, people, and other noises. This helps keep me safe. 

Then l get a bottle of water for after the run.  

Now that I am ready, I need to stretch.  This keeps my muscles from getting injured, pulled, or hurt.  

Someone, usually my Daddy, is with me while I run. 

He either runs or rides his bicycle.  I like to run. 

Running  keeps me healthy and strong. It also allows me to enjoy eating..ha,  ha 

3/24/13 - Sorry for the interruption....but Jesus says it's OK.

 

December 2000 - First Adopted

Sitting in church this morning; Pastor is leading up to the invitation. All of a sudden Alexandra says is a loud voice, "Battery not working." I reacted with lightning speed to cover her lips, but there was nothing I could do at that point to put the words back in her mouth. She knew she had a spare battery, but her reaction was instinctive. She could not hear how loud her voice was, but everyone else did. Fortunately, the Holy Spirit still moved in the service, and no one gave us an evil look.  So Thankful she is able to be with us during worship. That was not always the case. You've come a long way baby girl.

Summer 2012

God is good all the time and all the time, God is good!!

3/18/13 - Continued Thanksgiving

I always said I was thankful the Lord did not lay on my heart the desire to homeschool when I had 3 little boys at home. However, at times it feels like an intense version of it with Alexandra. It continues to be exciting as she discovers new language. We saw the movie Lincoln today, and I incorporated some of the details into our speech time. The understanding of things that were out of reach a few months ago is so rewarding. We also discussed the difference between the city and the country. She really got excited about that. She is more of a city gal because she loves to go, go, go,, and be in the midst of a lot of activity. She doesn't want to miss anything. It is like being asleep most of your life and then waking up one day and realizing the world is a very noisy place. Instead of being afraid or overwhelmed, she is soaking it up and cannot get enough.

This weekend Alexandra attended a dinner with us. We were sitting around the table talking, and she wanted to be part of the conversation. Admittedly, some of the things she said were topics we've heard many times before, but others were new and interesting--spring break plans, running a race this coming April, wanting to hear the sound tubing makes in the lake July 4th, and her birthday this summer. I still tend to interpret for her just in case others don't understand her speech, but improvement was once again evident. I hope you don't get tired of me saying that because it is truly a miracle. When your child has a disability small steps are so monumental. Another day, continued Thanksgiving......

How can I say thanks for the things 

You have done for me? 

Things so undeserved yet you gave 

To prove your love for me 

The voices of a million angels 

Could not express my gratitude 

All that I am, and ever hope to be 

I owe it all to thee 

To God be the glory, to God be the glory 

To God be the glory for the things he has done 

With his blood he has saved me 

With his power he has raised me 

To God be the glory for the things he has done 

Just let me live my life and 

Let it be pleasing Lord to thee 

And if I gain any praise, let it go to calvary 

With his blood he has saved me 

With his power he has rasied me 

To God be the glory for the things he has done

My Tribute by Andrea Crouch....sung at our wedding 32+ years ago,

3/13/13 - Update

We are so thankful for what hearing Alexandra has. I continue to receive positive comments from people saying she seems happier, more involved, and much more understandable. She talks of having 2 ears in heaven to hear with, no scar, no hearing aid, and no implant. Alexandra speaks of Heaven more than anyone I have ever known. I wonder sometimes if God sends her glimpses of what Heaven is like. Perhaps it is just a longing for a place where everything is perfect. Reminds me of a song my Mother speaks of:

NO TEARS IN HEAVEN

1. No tears in heaven, no sorrows given.

All will be glory in that land;

There'll be no sadness, all will be gladness,

When we shall join that happy band.

2. Glory is waiting, waiting up yonder,

Where we shall spend an endless day;

There with our Savior, we'll be forever,

Where no more sorrow can dismay.

3. Some morning yonder, we'll cease to ponder

O'er things this life has brought to view;

All will be clearer, loved ones be dearer

In heav'n where all will be made new.

No tears (in heaven fair)

No tears, no tears up there,

Sorrow and pain will all have flown;

No tears (in heaven fair)

No tears, no tears up there;

No tears in heaven will be known.

---

joanbab@pine-net.com

2/25/13 - Hard Worker

It is unfair to practice dessert words with pictures before dinner....smile. However, she had a great session again tonight. She continues to expand her vocabulary. We appropriately had "frustrated" as a new word. When she does not understand a word, she becomes frustrated, but fortunately that does not happen often.

2/14/13 - 1,000+ Words

Everything continues to progress. I tend to think it is a slow process until I think back.

On October 31, 2012, the day she was "turned on," we really didn't know what to expect. Alexandra was hearing sounds and loving it, but she didn't know what the sounds were. Now she knows at least a thousand words (of course that is just a guess, it could be more). She continues to expand her vocabulary. Before the implant we only used necessary words. Now we are able to explain new words as we encounter them. For example, last night in our speech therapy, there was a picture of someone dreaming. So, I explained what a dream was. There is so much she is capable of learning, but she has a lot of catching up to do. What little children normally learn through everyday life without even paying attention, she has missed. Will she completely catch up? No. Will she always have Autism? Yes.  Will she be able to understand what other people say to her (within reason)? Yes. Will she be able to make herself understood to others most of the time? I believe the answer is also Yes! When we began this journey, we knew what the best possible results could be. She is right on target.

One day Alexandra came out of school with the battery in her hearing aid dead and also her implant battery dead (which was a first). It reminded me how it used to be before her implant.  We have become so used to her hearing. We are spoiled and are truly blessed. 

We were in a restaurant this evening and a pager went off at the table behind us. It was sitting on the table and vibrated and made that funny sound. Alexandra turned around to see what it was. Every time something like this happens, it warms my heart.

One day this week Alexandra left her coat at school, and I sent her into her classroom to find it. As I followed her in I heard her ask, "Where's black coat?"  I understood her. Perhaps it was because I knew the context, but I also understand most of what she says. I heard one of the staff say, "I don't know what she is saying." It hurt me to hear that, but her speech continues to improve. That is why every night I sit down with her for about an hour and work, work, work. Do I get tired? Yes. Does she get tired and at times frustrated? Yes. Is it rewarding? Yes, Yes, Yes!! Am I thankful for this wonderful gift of hearing she has received? Yes, beyond measure.

Journeying on.......

1/23/13 - Latest Sound

The second hand of a battery operated wall clock....tick, tick, tick, tick.

A Time of Reflection - 1/19/13

Speech therapist saw a lot of improvement since our last visit over a month ago. Thankful for the affirmation. She is discriminating words with same beginning sounds and different endings  (ex: leap from leaf) and vice versa (Paul from tall). Also, she is responding without any prompting to sounds like water splashing under the car during heavy rain, someone dropping something, i.e, things we hear all the time and ignore.

One of the bands at Remedy Coffee last night played a really jazzy song with a strong, fast beat. She kept perfect time with the rhythm. Just seeing the changes in her is so touching. She loved it. My heart continues to be full of thankfulness and praise:

I will exalt you, my God the King;

I will praise your name for ever and ever.

Every day I will praise you

and extol your name for ever and ever.

Psalm 145:1-2

Laughter of children, singing of birds, beautiful music, running water, footsteps of our family coming down the hallway, furnace clicking on to bring warmth......... Listen for special sounds today and give Thanks!

1/16/13 - 3 month checkup

Christmas Eve

Wednesday Alexandra went for her 3-month post-op checkup. She has not completely healed yet (some flaking, extra skin where her scar is), but Dr Merwin doesn't need her to return for 6 months. She has also developed a sore place on her ear where the processor lays against her ear. This will eventually adapt with a slight callous.  He was pleased she is doing so well. We are so Blessed!

We asked about the possibility of an implant on her right ear. She would receive an additional 20% increase in hearing and localization of sound. In Alexandra's case, he did not think it was worth it as long as she is receiving benefit from her right hearing aid.Our Prayer is that her hearing in her right ear will stabilize for many years. She also had a hearing test this week on her right ear, and the results were slightly better than a year ago. That was a first!  Her ear may have been healthier at the time of this testing.  We also don't need to return for 6 months for any tweaking of the settings. God is Good!!!

Another good report is she is doing so well in the area of ear infections. She has not had one since the implant in spite of a cold which often leads to an infection. Thank You Father!!!

Speech therapy at UT will resume today. She has done really well during the holidays, and we are excited to see what the therapist thinks of her improvement.

As a surprise we are taking her to HEAR her nephew perform at Remedy Coffee in the Old City. What fun!

1/1/13 - New Skills and Sounds this New Year

Alexandra has known how to sort dirty and clean laundry for several years. However, during the holidays, I  decided she needed to learn how to wash and dry laundry. To do this efficiently, she would need to depend upon her hearing--in other words, hear the buzzers when it is time to take clothes out.  We were on the 3rd load when she heard the dryer buzz with her bedroom door shut, no less. This is something we all take for granted, but she would never have heard a buzzer prior to her implant. As the new year begins, I give thanks for another sound that is enriching her and our lives. Thank you Heavenly Father!!!