Anne

A peek inside the secret life

I have a special needs child. There. I said it.

Before our accident, I didn’t know any other family with a special needs child. I was blissfully ignorant of this hidden world in which I now find myself.

The first secret is that there are a ton of special needs children! Just visit any reputable pediatric therapy center, and it will be PACKED. There are so many families struggling in this secret world. It makes me realize how miraculous a healthy child is!

The second secret is that even though our government goes to extremes to make our country accessible to the disabled (and I’m grateful), accessibility is still a huge challenge for our family. For example, a simple trip to the pool is difficult for us. In my limited experience, pools are sometimes not wheelchair friendly, so I have to carry Anne into the pool area. Doing regular life is difficult – especially running errands. Lifting Anne and her wheelchair in and out of the van is part of my normal life routine. But I’ve found that I only have the energy for one outing a day with Anne. So grocery shopping, back to school shopping and general “running around” has to be spaced out.

The third secret is that even though there are tons of special needs families, it is still incredibly isolating to have a special needs child. The world goes by at lightning speed and leaves us in the dust. In many ways, this is painful – and if I’m not careful, I can lean a little towards self-pity. Seeing pictures of families enjoying vacations to the beach or amusement parks twinges a little. Watching families bustle about without the physical limitations of a disabled child makes me long for an easier life. It’s times like this that I cling to the fourth secret of having a special needs child…

The fourth secret is the best. I am still surprised at how much joy Anne brings our family and others. The time I get to spend with Anne is beautifully rewarding. She’s a treasure, and everyone who spends time with her comes away better for it.

Recently, someone asked Eric to describe his relationship with his children. He said, “My oldest thrives academically so I share my love of technology with him. My youngest is gifted athletically, so I share my love of running with her. My middle daughter (Anne) struggles with most everything, yet she teaches me the most about life.” Anne is our glue. I can’t imagine life with her any other way.

Pray for Anne…

June 2014’s prayer requests:

Please pray for Anne…

  1. Summer is in full swing and I’m already tired and overwhelmed. Please pray for patience for both Anne and me. For me, to tackle one task at a time – and for Anne, to wait for me to tackle one task at a time ;)
  2. Anne is having micro-seizures that cause her to have extreme temper tantrums. Thankfully, they are short. Please pray for these seizures to subside either on their own or with increased medication.
  3. Lastly, please pray for Anne’s encouragement – spiritually, emotionally and just with pure fun. It’s summer after all … we’re supposed to have fun!

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

My end-of-the-school-year Rant

Instead of joining everyone in ranting about how crazy the end of school is, I’ve decided to just go MIA. I watch the emails pile up in my inbox about this end-of-the-year party and that end-of-the-year party and I can’t keep track of them. I didn’t show for my oldest’s party, and I didn’t help with my youngest’s party. I didn’t even contribute food to Anne’s end-of-the-year breakfast. I am the worst end-of-the-year mom ever.

But what I have been doing is trying to prepare myself for the even harder months of June and July – those months when Anne (+ the other two kiddos) are home all day. Anne requires tons of attention and time to keep her from regressing over the summer. I have to keep her mind engaged and provide new challenges. It’s work,  joyful work, but work none-the-less.

The one end-of-the-year event I did purpose to attend was Anne’s award’s ceremony. In fact, the whole family came! This year, her special education teacher chose Anne as the “Academic Student of the Year.” Anne was given a medal in front of 400 students. Afterward she said, “I was so embarrassed!” That statement, alone, is proof of her progress as it reveals a new level of self-awareness that we haven’t seen before!

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This is what Anne’s teacher said as she presented her award:

The year’s Academic Student of the Year in Ms. Adrienne’s Class is someone who has not only improved academically in all areas, but has improved in being able to work independently and in having appropriate social interactions with her classmates and teachers. In addition, this student has mastered many of her gross and fine motor skills and is starting to walk around the school building regularly with hand held adult assistance or her walker. This student’s success is attributed to not only the student working hard, but also the support she has received from a variety of teachers and therapists. Most of all, the support this student receives from her family and her church is what has helped her to achieve her goals. We are pleased to announce Anne Jackson as Academic Student of the Year. Way to Go!! We are very proud of you!!

We are so proud of Anne. Thank you for your prayers and support of Anne and our family. Your support, prayers and encouragement have been multiplied through Anne so that an entire school has taken notice. May God receive all the glory!

Pray for Anne…

May 2014’s prayer requests:

Please pray for Anne…

  1. Anne’s self-awareness has improved so much that now she becomes extremely angry when she doesn’t get what she wants or has to wait to get what she wants. She screams, cries and bites. Her biting is dangerous because sometimes she bites herself. Please pray that Anne would learn to control her anger and for us as we try to calm her during her anger spells.
  2. Summer is almost here! Please pray stamina as I seek to find new ways to challenge Anne this summer.
  3. Please continue to pray for Anne’s walking and reading. She has made great strides in her walking and small strides in her reading. I’m praying for her reading ability to explode this summer!

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

TheraSuit Year 3: Wrap Up

Anne finished her third week of Intensive TheraSuit Therapy strong!

It will take a few months for Anne’s muscles to recover and heal, but if the results are similar to the last two years’ sessions, then we’ll see a big cognitive and physical boost 3-4 months from now.

Thank you for your prayers for Anne. She stayed healthy (even though all of her family battled severe colds), and she stayed strong!

Here’s a short video of her walking in the “suit” with a cane at the end of the 3rd week… Notice how she introduces herself at the end of the video. Anne never meets a stranger :)

Special Visitors

According to Anne’s teacher, a few of the fire fighters who helped with Anne’s rescue (4 years ago) came to visit her this morning at school!!! How incredible is that??!!!!

The emergency personnel that surrounded our vehicle in the minutes after our accident were real-life heroes that day. God used those men and women to save Anne’s life. Many of them came to visit Anne in the hospital – days, weeks and months afterwards. And many of them still follow Anne’s story on this blog.

So here is a shout-out to the heroes that helped save Anne’s life…Thank you!! Thank you for risking your life for the welfare of others. Thank you for your commitment to Anne’s recovery and thank you for taking the time to visit her today at school! You made her day and you made her family very grateful.

Anne’s Four Year Milestone

Today marks 4 years since the accident. On April 13, 2010, Anne woke up as a healthy, able-bodied, 5-year-old child. At noon, she was almost killed in an automobile accident.

Every day since then is a gift for which we are profoundly thankful.

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Lately I’ve been tweeting some of Anne’s more pithy sayings. Here are a few of my favorite tweets:

Anne finished up her second week of Intensive TheraSuit therapy on Friday. The end of the second week is definitely the most difficult. Here is a video of her walking with a cane late in the day on Friday. Her legs look like noodles. She is SO tired!

We are so thankful for our precious Anne and we can’t wait to see what incredible things God does with her life!!!!!

 

TheraSuit Year 3: Week one update

Anne had a fantastic first week!

I think Anne has finally reached a point in her cognitive recovery where she realizes she has a brain injury AND she understands she has to work to get better. Because of this realization, she is determined in therapy. I’ve never seen Anne work so hard with such a great attitude! I’m so proud of her.

One of the ways TheraSuit therapy works is through the unique design of the “suit.” Every movement is more difficult in the suit. It’s sort of like a baseball player taking practice swings with weights on his bat. When he steps up to the plate, the regular bat feels lighter and easier to swing. Similarly, when Anne performs all of her exercises in the “suit,” she is able to strengthen so many muscles at once – making it easier for her to move without the suit. One highlight of the week was Anne’s ability to walk on the treadmill. She walked 20 minutes on the treadmill while wearing the suit! That’s a huge accomplishment for Anne.

Another praise from the week was that God preserved Anne’s health. This is truly miraculous as Kate, Canon and Eric have all fought off horrible colds with fever and severe congestion. Please pray that Anne and I continue to stay healthy throughout the next two weeks.

Thank you!

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Pray for Anne…

April 2014’s prayer requests:

Please pray for Anne…

  1. Praise God that MEDICAID APPROVED ALL of TheraSuit therapy!!!! SO thankful!!!!!!!
  2. Anne is still battling a stuffy nose…please pray God would give her the will and strength to persevere in therapy and also that he would heal her quickly,
  3. Please pray that Anne would improve in strength, balance, walking and eye tracking. Anne has responded so well to this therapy in the past. We are grateful for the opportunity and provision to do this therapy for a third time!
  4. Finally, pray for wisdom for the therapists and for Anne and me to be encouraging to the therapists and other families – that God would be glorified in our lives and witness.

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

Roller Coaster ride

Anne is changing.

Typically, Anne progresses in her recovery painstakingly slowly. But lately, the changes have been super quick. Some changes are good – and some seem “bad” but my experience with Anne is that all change is symptomatic of a deeper healing of the brain. So I try to view change as progress.

Here are examples of some of her most recent changes (both “good” and “bad”).

  • She has a stronger will and even less patience – which means she screams (a lot)!
  • She will not wait for you to help her – she stands up and tries to walk wherever she wants to go- whether I’m there to help her or not.
  • She loves playing “pretend” and lately her pretend games have been more nuanced and complicated.
  • She spills her drink at every meal – on purpose.
  • She’s stopped telling me when she needs to go potty.
  • She’s more oral – chewing on her hands when she doesn’t have an appropriate “chewy tube.”
  • She’s walking better – with more fluidity and better balance – and even practicing more with a cane!
  • She consistently recognizes sight words or tries to sound out words that she doesn’t know.

Anne’s life is such a roller coaster…mainly because the brain is so complicated!

Anne begins three weeks of intense TheraSuit therapy on Monday. Her private PT thinks this is an opportune time to start this therapy because of all the changes in Anne. Something is happening in that little brain of hers and this upcoming session of intense therapy will only challenge her toward further improvement.

Stay tuned for updates and pics of Anne’s progress during the next three weeks. Thank you for your support and prayers!