(A Shared Post) – What Parents of Special Needs Kids Want the World to Know

Nearly 5 months after completion of a TPO resection,  Savanna is doing well.

She is taking steps, she is engaging in the world around her.  She is having periods of self-regulated behavior.  It is wonderful, pure and simple.  Here is a video of just how pure and simply wonderful it is at times.

Now I think to myself,  “Wow! Maybe she could actually be well enough to ride the little bus (dare I say the big bus)!”  There was a time, when that did not seem like a real possibility.

It is not all roses with Savanna though, as is true in most households with small children.  She still struggles to regulate herself at times.   I struggle to effectively help her.  When this problem unexpectedly goes on for hours, it is overwhelming and exhausting.  There are no pictures or video of these times.

It takes all the patience you can muster sometimes.  Just when you think she deliberately picked up the widget and put it in a container, you realize…well, hmmm, we need to keep working on that.

And then there is Austin, our control sample.  I stop and take a moment away from Savanna.  And, I find Austin carefully populating the divided sections of his hi-chair tray with cereal – sorted by type and color – after I hastily dumped a few handfuls of several types of cereal in a pile, in the middle of the tray.  He does this without any initiation from me or unwitting leadership from his brothers.  He just does it naturally.

The healthy, natural, normal brain is a wonderful thing to see.

I work daily at carefully choosing the best steps to take down an unlit path with Savanna.  I feel most days I make good choices, and others, well, let’s just say I step in ‘it’.

2013 August-7256

Sometimes I sit down try to write about what I would like to tell others about being a parent to a special needs child.  But the words get tangled and the thoughts misconstrued.  Here is a link to a post written about this subject by a mom in our church.  Savanna is still quite young and her ultimate outcome is still largely unknown as are the challenges she may face in the near future.  I relate to her post, on many levels.  Perhaps Savanna’s young age coupled with the aggressive resection have altered her life dramatically.  And, maybe I won’t have to experience some of the feelings she describes.

As a final thought… God allowed us to choose Houston as our new home.  He did this knowing we would receive the right care for Savanna.  And we have realized such care.  He did this knowing we would meet wonderful neighbors.  And we have met such neighbors.  He allowed this knowing we would be surrounded by people who care and want to help.  We feel blessed.

I encourage you all to read her post.

What Parents of Special Needs Kids Want the World to Know.

-ken

13 thoughts on “(A Shared Post) – What Parents of Special Needs Kids Want the World to Know

  1. Ken, read your latest post, and also the article about what parents want others to know. What a faith-filled lady! Know that you have a cousin in Louisville who prays for you, Savanna, and your family every day. I’d love to meet Savanna when you all are next here.

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  2. Another wonderful post…thanks for the link! Kris and I almost cried watching her walk and hearing the pure joy in both of your voices…Go SAVIE-D!!!

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    • I am thinking of you all tonight. Tomorrow is a big day for your family and Alfredo. I pray it goes well. You are in our prayers, and we will be waiting in the wings for updates. Call anytime, you know the number.

      -ken

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  3. Ken words can’t express how I feel right now ! But here it goes, happy happy for savanna! The smiles and the sounds of Rebecca says it all, I love you all!!

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    • Hi Irma

      The video is really something. Yes, Rebecca was really into it at that moment. I work all the time with Savanna, just to perhaps have a moment like that. So while excited, I was not as surprised as Rebecca was in that video. Regardless, it was an awesome moment that really invigorated me as I feel like have a lot to do with her success at some of these activities right now. God is leading me, and I in turn, lead Savanna.

      -ken

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    • Hi Christi,

      Thanks for reading. The video is awesome for me to watch in retrospect. We have slid a little backward lately as she seems to be teething again (or so we hope that is the problem…) I am so glad you read the blog post I linked to. While I don’t feel we have lived every experience described there, I felt it fit with our situation.

      Look forward to seeing you in December.

      -ken

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  4. You two are amazing people and even more amazing parents. I cried watching that video of precious Savanna walking. I miss you guys so much.

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  5. Pingback: 6 months seizure free… | Savanna Lininger's Journey with Epilepsy

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