School update

I think I’ve shared before how grateful I am for Anne’s school… but it bears repeating :-)

We had Anne’s annual IEP meeting last week – which is basically a time when all of Anne’s teachers and therapists gather in one room to review Anne’s progress and set new goals for the year. I always cry at these meetings… and I always feel silly when I do – but I can’t help it. I cry when I’m grateful, and I’m just so grateful for all the people that seem to be “for” Anne. They are truly rooting for Anne to do well, and I feel they give their absolute best to help her reach her potential.

Anne receives Physical, Occupational and Speech therapy at school. She is in a regular kindergarten class, and she has her own para-professional to assist her in all of her school tasks – from writing to walking. Her para-pro is an answer to prayer. He (yes, I said “he”) is a recent college grad who has a degree in phys. ed. …He wants to coach – but he had to settle for being a para-pro… to a difficult seven-year old girl (who LOVES him – oh yes. Anne loves him.) He is so steady. He has endured much abuse from Anne – biting, hitting – but he never loses his temper – he just hands out the appropriate consequence. He notices subtle behaviors in Anne that others would easily miss – both good and bad. He takes the initiative to do more than what is expected to help her reach her potential. He really is impressive!

Anne’s primary special ed. teacher is so dedicated. I feel like it’s her number one goal to provide the best services for Anne. Her therapists are all great, but Anne especially loves her Physical Therapist, Ms. Lynn. Somehow Lynn is able to push her without Anne getting too upset. Today she walked farther than she ever had… and she is starting to propel the walker a few steps by herself!

How much farther Ms. Lynn?

Finally, the counselor at Anne’s school recently reached out to me. She is going to include Anne in her Rainbows program (which helps kids cope with grief, feelings of being different, etc.) She told me that when Anne came to Nickajack, she took the initiative to read all of Anne’s CaringBridge site – just to familiarize herself with Anne’s history. She’s been following Anne, and determined that Anne’s self awareness has improved so that she would benefit from her Rainbows group. She’s right… It is the perfect time. Anne’s counselor was just named the NATIONAL SCHOOL COUNSELOR OF THE YEAR. Now that’s amazing!!!! The AJC  ran an article about her. You can read about her here.

Anne is doing so well in school… but one of the reasons is because she goes to a great school and she is surrounded by great professionals! Go Nickajack!!!!

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Summer begins

Summer vacation is here!  I’m excited to have Anne at home, and I’m anxious to have Anne at home :-) It reminds me of how I felt when Anne graduated from the Day Rehab program last October. I was tempted to feel anxious about bringing Anne home for good – but I had a sense that God was working on Anne’s behalf in ways I couldn’t see… yet! After one week at home, God brought both a Speech Pathologist and a Physical Therapist across our path. God continues to use those women in Anne’s life. So I’m excited to see what He has in store for this summer…

Especially, because I think Anne’s on the brink of something big. On the surface, it appears as if she’s regressed… She’s more orally fixated, more fidgety; her impulsivity seems to be off the charts. But in the past, what looked like regression was really something new awakening in Anne’s brain, and it just took her time to sort it all out. I’m hoping this is the beginning of another amazing work of God in Anne!

I also pray that I have the wisdom to balance rest and therapy. I’ve found that Anne makes large strides in her recovery after periods of rest.

So please pray for our time at home. It’s tough for me to balance all of my household responsibilities with caring for Anne at home AND spending time with all three children. It’s a bit overwhelming for me frankly… So, pray for energy and patience for all of us Jacksons this summer!  Also, please pray for Anne’s continued healing… less impulsivity, improved cognitive abilities – and for her feet. Her poor feet, especially her left foot… I wrote a whole entry about Anne’s feet last fall, and her left foot is still as weak as ever. I pray earnestly for God to heal the part of her brain that controls her feet.

Thank you for staying close to our family in prayer this summer!

Testing a theory…

I realized during Spring Break that I might be pushing Anne too much.  Yes, her seizure medicine makes her tired, but I also think her packed schedule is a factor.  SO…  I’m keeping Anne home every Friday from both school and therapy to give her a long weekend to recover.  I’ve loved having her home this morning.

We listened to music and sang together. We even waltzed to Third Day’s, Born Again.  Anne said, “Hee Hee, this is fun!”   But since I got to spend time with her during her best time of day (right when she wakes up), I wanted to test a theory…

I believe Anne can read…  She knows all of her letters and sounds.  And she has the ability to blend sounds together.  For example, if I said to her, “Anne – what is this word…  ssss    uh   nnnnn,”   (and I put lots of space between the sounds…) she’ll answer, “sun.”  So I’ve been thinking that it might be her visual perception that’s preventing her from reading.  Anne CAN see, but sometimes she has a hard time interpreting what she sees or focusing on small details on a busy page – like letters…

So, mixing a few ideas from both her OT and SLP, I got a cookie sheet and placed three chunky magnet letters on the sheet.  Holding it vertically, so the cookie sheet was right in front of her face, I asked her to touch, and name the sound of each letter.  Then I put them in order, and Anne said, “buh…   ah…    teh  ….  bat!”  YES!!!  She went on to read: sat, mat, fat, jug, tab, bam….  well you get the idea. 

Anne's first word

Anne is so proud of herself.  As I put her down for a nap, she looked up to the butterfly painting above her bed and said, “Guess what butterfly?  I can read!”

I can read, butterfly!

Anne’s 1st day of school!

I really can’t imagine a better situation for Anne. She is part of a small group of students most of her day. She only stays half the day; she is getting loads of therapy from qualified therapists, and her teacher is excited by the challenges Anne brings to her classroom!

After a brief rest period at home, Anne had a speech therapy session this afternoon. I thought she might be overwhelmed and overtired from school, but she did GREAT! She was calm and focused. She was able to attend to tasks for a longer period, and she was able to do certain skills that she has never been able to do before.

But I think I was most encouraged by a phone call from a friend early this morning. She just called to say that she remembered that this was Anne’s first day of school, and that she had felt led to pray for us all morning. Her prayers reminded me that our family is never forgotten by Jesus – that He sees us and is interceding on our behalf.

Thank you to all of you who have prayed for Anne. We are most grateful!!!!

-kathryn

Only a week?

Has it really only been a week since we got Anne’s gait trainer?  Seriously, only a week?  Last Thursday seems like a lifetime ago – Anne has changed so much…

Anne's Rifton Pacer

She’s walking SO much better now.  She loves to walk to the piano, and then I turn her around and she walks back to the sofa.  The other night, she wanted to quit, but we encouraged her to walk as fast as she could to the sofa.  When she finished, Eric hugged her and said how proud of her he was.  Then Anne said, “I’m proud of me too.”  YES!  She put forth EFFORT!  AND had the self awareness to feel proud of herself!  We’ve been praying for that :-)

Another thing…  Anne was able to sit in my lap – without moving – just relaxing for almost five minutes.  That might not sound like a big deal – but to me, it’s HUGE.  There is something about Anne’s injury that prevents her from sitting still. While she was in the hospital, she could not relax in my lap – she would constantly want to sit up.  And she’s done the same thing at home – not being able to just sit in my lap – but always wanting to change positions.   This week, that’s changed!  I’ve so enjoyed Anne’s short bouts of stillness!  You don’t think about the gift of a relaxed child in your lap, until – well – your child can’t relax – but Anne is improving :-)

Anne’s also doing really well with her new speech therapist.   Therapists are people – with different personalities and gifts, and some have meshed well with Anne, and others – well, not so much.  This therapist is able to pull the best out of Anne.  We’re very thankful for her!

I’ve learned alot about sensory processing issues from this SLP (speech language pathologist).  Anne struggled with sensory processing before the accident, and it’s only magnified in her now.  I’m excited for Anne to start working with an OT in the area that has extensive experience with Sensory Processing Disorder.  I’ll probably write more about that later…

But for now, it’s obvious that God is working mightily in Anne!  She is emerging more and more.  Getting angry, showing excitement, demanding her way, kissing Canon, correcting Kate, and saying, “I love you Mama.”  :-) 

The joy she brings makes up for all the hard work of caring for her.  We’re very grateful in the Jackson house these days!

-kathryn

A different Anne

This evening Canon and Kate built a little train in the driveway made of a bicycle and two tricycles. They connected all three with bungie cords. Kate and Canon rode on the first two with the third empty. Canon then stated enthusiastically: “when Anne is well, she can ride with us!” Kate and Canon had so much fun with great laughter as they rode in big wide circles while the funky train weaved back and forth with only moderate control. I so wanted little Anne to be a part of the joy that kids experience in this kind of play. . . . .maybe one day God will bring Canon’s wish to our minds as we see Anne playing with her brother and sister. . . . .

Since Anne has been home all day these past couple of weeks, Anne’s deficits are more apparent. Canon has been more sad and moody. Noticing the change, Kathryn asked Canon why he was feeling down. Canon said: “Anne just seems so different. I can’t play with her like I used to, and when I try to talk to her, she starts talking about something else.” …meaning that Anne has a difficult time staying on topic.

We’re all very sad that Anne is so different. She’s not only different because of her physical and attention deficits, but her personality has shifted as well. Simply put, all the intricate connections in her brain were changed by the injury.

On the flip side, we get to watch God build Anne into what He wants her to be. He cares for her more than we can imagine. He has already called an OT, PT and Speech Therapist to work with Anne while she is home. These women individually felt God calling them to use their skills to help Anne – and stepping out in faith, God is using them to richly bless our family!!

-kathryn and eric

Graduation time!

Tomorrow is Anne’s last day of Day Rehab. They’ll even hold a graduation ceremony for Anne at the end of the day!

The Day Rehab program has been excellent for Anne, but Eric and I both feel good about Anne moving to the next phase of her therapy. She’ll transition to more traditional out-patient therapy. She’ll also go to Kindergarten in the public school system – where they are more equipped to serve Anne.

I don’t know what our new normal will look like. It seems like we will be juggling lots of therapy appointments with school and rest. Poor Anne still gets so tired.

We’re praying that God will bring just the right people into Anne’s life that He can use to push her forward in her recovery. She needs firm, kind therapists and teachers. She needs an especially good speech therapist that will help her reach her potential as she continues to struggle with low attention and increased impulsivity.

There are so many unknowns. I have felt very overwhelmed this week. God has met me through the kindness of friends who drop everything to come help me do laundry, or watch the kids or bring me lunch.

Even though I feel anxious about all the unknowns, Eric is so good about reminding me of what is true. God KNOWS – and He is doing good for our family.

Thank you for praying with us… for just the right people to help Anne – and for the grace to believe in God’s good plan for Anne and our family. Thank you – kathryn

Feeling weighed down…

I’ve put off updating the CaringBridge site because I don’t feel like there’s anything exciting to report… I guess that’s the nature of Anne’s injury… recovery is slow. I’ve been struggling with impatience lately :-)

I still feel weighed down by the fact that my sweet girl has such a serious injury. Today she looked at a picture of a black dog, and she called it a sheep, and then a horse, but couldn’t find the word “dog.” She has to concentrate so hard to answer such simple questions.

She’s working just as hard physically. Today her PT asked her to bend her left leg. Anne was laying down flat on a mat. You could see her jaw clench in concentration as she raised her left leg straight up, and then after a few seconds she bent her knee in a jerky motion. She repeated this for the therapist a few more times – each time having to concentrate like crazy just to bend her knee.

As I watch her, I feel this strange mix of joy and sadness – I’m so proud of her, but grieved to see her struggle so…

God does give me glimpses of joy. Yesterday evening, a bunch of family came to the hospital to eat dinner together. There was cheerful banter as everyone ate burgers and fries in Anne’s room. Anne just sat gazing at everyone with a content smile. The only reason we were together was because of Anne. That’s a gift that’s come out of this tragedy.

And then today… I took Anne for a walk. Anne can reach up and touch all the buttons for the elevators. I thought back to Anne’s first day in rehab. Her therapist asked her to push a HUGE yellow button. We all cheered as the therapist had to place her hand on the button and she was BARELY able to press it down. She’s come a long way to be able to so easily find and press the elevator buttons! That was a sweet reminder from God.

Perseverance – emotional and physical. That’s our need right now :-)

Please pray:

  1. That Anne would gain endurance and not tire so easily. When she tires, she gets extra emotional, so also pray that she would be able to regulate her emotions.
  2. That Anne would make great strides both cognitively and physically in the next 10 days before her discharge date – specifically that she would be able to sit unassisted and communicate consistently what she wants and needs.

Thank you! -kathryn

A Good Day!

Her physical therapy session was her most challenging to date. Her therapist really pushed her, and Anne rose to the challenge. She tried her absolute best to do EVERYTHING her therapist asked of her even though it was extremely difficult. She was so brave, and I’ve never been prouder of her!

Her speech therapist took some time to evaluate her word retrieval abilities. It was tough to watch Anne look at a picture of a cup and not be able to remember the word. But again, she tried her best and was able to remember more than half of the words she was asked.

Tonight, she became more conversational. It’s kinda like a switch came on, and she just started talking more loudly and using more words.

The brain is God’s creation, and it is amazing. Little Anne is building new pathways. Little by little, God is helping her to heal.

We are very grateful. -kathryn