Tag Archives: CHARGE Syndrome

Special Needs Children: A Parent’s View on Restraining a Child

There has recently been a news story reported in several places regarding a six-year-old student being handcuffed in a Georgia school.  I have read several comments by numerous people about their views as well as the mother’s concerns as reported in the article.

First of all, I want to say that I do not know this child or the extent of his special needs or diagnosis.  I don’t even know what actually happened at the school to require the use of handcuffs on this child, other than what has been reported.  My views come from my own experiences as a parent of my own special needs child. Continue reading Special Needs Children: A Parent’s View on Restraining a Child

Weekly Photo Challenge: Containers

It has been a while since I have posted for the WordPress Photo Challenge.  When I saw the subject earlier today, I started going through in my mind of where I might be able to find something to represent a container.  I thought about going to a trucking terminal and taking a picture of trailers backed up to the dock, loading and unloading their freight.  I thought about riding over towards the tank farm and trying to get some wide-angle shot of all of those.  Nothing really worked in my head, so I came home…and found my daughter.
Meet Savannah.  Now at first, you might wonder if ISavannah have lost my faculties, but I assure you, I have not.  What you see in this picture is a container.  This container holds my oldest daughter.  Savannah.

Some of you who know Savannah, know that she was born with CHARGE Syndrome.  A little later, as a side-effect of CHARGE, she had to have a trach and a colostomy.  She doesn’t walk and she doesn’t talk, though before her trach she had an eight or so word vocabulary.  While in the hospital, she suffered a brain injury and never regained her ability to speak.

The short (very abbreviated) story above is only part of the story.  While Savannah has had a lot of difficulty in her development, she has also made a lot of great progress.  She is able to pull up to stand.  She loves to laugh.  She knows that there are things she is not supposed to do and does it anyway just to see if she can get away with it.  She can use limited sign language.  She is strong.

But she has not become strong enough to break out of her container.  This little body that holds my daughter.  Savannah is stuck inside a body that will not let her communicate what she needs or help her get where she wants to go.  I have two other daughters that have, to date, had a healthy life.  I love being able to do things with them, but as much as I love to do things with them and watch them experience and learn new things, I miss being able to do the same with Savannah.

I was looking through some pictures on my computer today and noticed that I don’t have as many pictures of Savannah as I do of my other daughters.  This hurt.  It is also part of the life that we have.  Savannah doesn’t know or care that I am trying to take pictures of her.  She spends the majority of her time on the floor, and will roll out of frame before I can get a shot composed.  Now some may say, “Use the rapid fire shutter,” or “Just take a picture however it turns out.”  I could do that, but when she moves, I usually get a picture of her back, or worst case, an empty frame because she fell out of it at the last second.  She does seem to have a pretty good sense of when I am about to press the shutter.

I want to, and would love to have, a more typical life with all my daughters, but Savannah is trapped inside that container.  That container that is sealed up and will not let the words, “I love you,” or “I’m scared,” or “My stomach hurts,” come out.

At this point, you are probably saying, “Man, this guy sure is having a pretty large pity party here on the Internet; maybe he should get some help.”  Maybe.  I just had these thoughts about the photo challenge and needed to get this off my chest.

Savannah, even with her in spite of her disabilities, is still a very happy little girl.  She loves to snuggle up and will curl up and go to sleep.  She will also laugh like nobody’s business with a laugh that will make anyone nearby also laugh…it is that contagious.  She has a little stubborn streak (it’s really a big stubborn streak, but I am trying to be nice about it).

When we eat meals, she sits in a high chair next to the table.  She likes to try to put her feet on the table beside her, which we don’t allow.  Savannah will wait for me to turn my head and put her foot back on the table.  When she sees me starting to turn around (I have already seen her foot out of the corner of my eye.) she pulls her foot back off the table.  She knows she’s not supposed to.

She is in there; in that container.

I really want her to be able to break free of that container.

I love my Savannah.

Horseback Therapy Program in Danger of Eviction

Please help!

In Colfax, NC, there is a small organization that has a huge mission.  Horsepower Therapeutic Learning Center helps kids and adults with special needs with horseback therapy.  You can read more about them from their website here.

This past week, the Piedmont Saddle Club, who owns the land where Horsepower has a lease agreement has ordered them to clear the premises.  Please take a minute of your time to write the president, Mr. Ken Taffer (kentaffer@att.net), and ask him and the board to reconsider their position on eviction.

My daughter, Savannah, as many of you know, was born with special needs.  She was born with CHARGE syndrome, and part of that diagnosis is her low muscle tone.  Since she has been riding she has been able to sit up more easily and hold herself in an upright position.  She has even begun to pull up to tables to get things that she wants.

Savannah is also non-verbal.  Early on, she had an eight or nine word vocabulary, but after a two-month stay in the hospital and six weeks on a ventilator, she lost those words and has had very limited speech since.  One of the things they do in Horsepower is to have non-verbal children use other means to communicate with the horse.  She pats the horse’s neck to signal “Walk On!”  Since doing that in Horsepower, she has also been able to carry that over to me.  As I carry her, and she is ready to go, she will pat me on my shoulder or chest to “Walk On.”  This is huge for Savannah and her history.

Savannah gets so excited when she knows it is time to go ride her horse.  Her laughs and giggles can be heard throughout the arena where she rides because she enjoys the time so much.  As you can see from above, this is very helpful for Savannah and it would be a shame if she lost this valuable therapy because the board members of the Piedmont Saddle Club cannot come to some amicable arrangement to keep Horsepower there.

While I speak of Savannah, because she is my daughter, I have heard so many stories of other families whose children have been helped by this program.  One young girl, whose mom I met this past week, was unable to sit up by herself 14 weeks ago.  Now she is able to sit up on the horse unassisted.

The only things I ask people to do is to write a simple e-mail to Ken Taffer, above, and ask that he and the club reconsider their position and also to get other people you know to do the same..  If you can do more to help, great!  I believe that if the club can see the community support for the Horsepower program that they might stop the eviction process and work towards a reasonable solution for both parties.  Even if you don’t live in this area, letting the club know that people see what is happening will help.

Thanks for taking a moment to help out!

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