I haven't talked much about my son who has Tourette's. Unlike the movie, Rain Man, his tics do not emanate from the mouth (except he does talk negatively and angrily to himself such as I suck, I'm a loser, I hate my life). Depression is a real factor.
Rather, his tics involve his body. I told you that, as a baby, he was a head banger in the crib. As a toddler, he banged his head against the seat of the car or against the wall if he was sitting on the floor. During those early years, his eyes became part of the sequence. They would roll back, in unision. It was very unnerving.
First grade bought about a new addition. The tics would start with the head and eyes but would then include the whole shoulder dipping with the head and started to include the hip. It was pretty scary to watch. His teacher and I were afraid he was going to have a blown out seizure.
It was hard trying to evaluate this without disturbing my son who was already painfully aware of how distracting he was. Combine that with the fact that he is really shy.
He started taking Risperdal and has been taking it for over six years. This past year (7th grade), we had to increase the dosage for the umpteenth time to help assuage the tics which were aggravated by he teasing he received in the school setting. He was called "Tic Boy" and other unsavory terms and asked constantly what was wrong with him.
Gentle reader, the worst part of the ill behavior wasn't the reaction of his fellow students but the reaction of some of his overworked and overwhelmed teachers.
More on that in tomorrow's blog. Take care of yourself out there - it's a wild world.
Tuesday, July 29, 2008
Sunday, July 27, 2008
Summer Great Time to Capture Kids and Arkansas
Here are the Huck Finn wannabees and the raft they created during Adventure Camp at our local state park.
It is good to encourage the kiddos to "get unplugged" and enjoy the outdoors. See my blog post dated July 18th.
The Last Child in the Woods written by Richard Louv is some good summer reading for those of you dealing with children who have sensory issues, attention deficits or are just plain too involved with electronic games and computers.
http://www.capturearkansas.com/search/photos/jeannie+stone
Our state newspaper is hosting an online photography contest inviting everyone to submit their best photographs depicting life in Arkansas. Anyone can sign up to submit photos or to cast votes. The top runners in each of the designated "chapters" will be featured in a coffetable book, and at least one photo from each participating photographer will be included in a DVD. So, even if you haven't any ties to Arkansas, go and view what we are all about. But, be prepared! You will see a double decker outhouse, plenty of tractors, and lots of shots of our beautiful woods, lakes, deltas and mountains.
May your day be filled with the wonders of nature and beauty wherever you are!
Thursday, July 24, 2008
Feeling Stupid
During an afternoon bike ride with a neighbor and her daughter, my 13 1/2 year old daughter was moritified by the mother who screamed at her. My daughter had not heard a car approaching.
Several hours later, my daughter delivered a hand written note apologizing for her stupidity, and I heard my daughter crying and saying, "I'm stupid, I'm stupid." over and over.
There are few things that break a mother's heart more completely than listening to a child berate herself.
Take time to hold a hand, smile or encourage a child today. There's room at the table for everyone!
Several hours later, my daughter delivered a hand written note apologizing for her stupidity, and I heard my daughter crying and saying, "I'm stupid, I'm stupid." over and over.
There are few things that break a mother's heart more completely than listening to a child berate herself.
Take time to hold a hand, smile or encourage a child today. There's room at the table for everyone!
Friday, July 18, 2008
Last Child in the Woods
For those of you who don't know, I am the mother of three special needs children. My 16 year old has a form of high functioning autism called Asperger Syndrome. During the early years, it was marked, primarily, by sensory processing issues and a lack of connectiveness with his environment, and, most disturbingly, people. It is that connecting that I'd like to address in today's blog.
In 2005, Richard Louv, a journalist, wrote the national bestseller Last Child in the Woods for which he won the 2008 Audubon Medal. In the book, Louv coined the phrase "nature-deficit disorder" which referred to the worldwide trend that "children are spending less time outdoors, resulting in a wide range of behavioral problems." This book has spawned the Children and Nature Movement across the globe. It is based on the simple idea that: "the child in nature is an endangered species, and the health of children and the health of the Earth are inseparable."
The reason I bring this up is simple. Although not directly targeting special needs kids, this article expounds on the therapeutic virtues of spending time outdoors, and, although my son doesn't clamour to the door at the mention of taking a hike, such diversions have a huge impact on his mental acuity.
My child has a huge talent for playing electronic games, but it drains him, leaves him wild-eyed and agitated, and he simply can't regulate the time he spends holed up in his room. I find that I am trying to keep tabs on him, making sure he doesn't wile away four hours at one sitting!!!
Over the years, I have noticed he is more present, engaging and calm when he has a bit of fresh air in his lungs. Because he is not self-directed in unfamiliar tasks, he is in charge of taking the dog for a walk everyday. That is a concrete objective that still gives in to the "being outdoors" school of thought.
If you live in a place without easy access to parks or hiking trails, take advantage of neighborhood walks. I promise you will see a difference in your child. According to Louv, "No one among us wants to be a member of the last generation to pass on to our children the joy of playing outside in nature."
visit www.childrenandnature.org. or http://richardlouv.com.
Stop and smell the roses!
In 2005, Richard Louv, a journalist, wrote the national bestseller Last Child in the Woods for which he won the 2008 Audubon Medal. In the book, Louv coined the phrase "nature-deficit disorder" which referred to the worldwide trend that "children are spending less time outdoors, resulting in a wide range of behavioral problems." This book has spawned the Children and Nature Movement across the globe. It is based on the simple idea that: "the child in nature is an endangered species, and the health of children and the health of the Earth are inseparable."
The reason I bring this up is simple. Although not directly targeting special needs kids, this article expounds on the therapeutic virtues of spending time outdoors, and, although my son doesn't clamour to the door at the mention of taking a hike, such diversions have a huge impact on his mental acuity.
My child has a huge talent for playing electronic games, but it drains him, leaves him wild-eyed and agitated, and he simply can't regulate the time he spends holed up in his room. I find that I am trying to keep tabs on him, making sure he doesn't wile away four hours at one sitting!!!
Over the years, I have noticed he is more present, engaging and calm when he has a bit of fresh air in his lungs. Because he is not self-directed in unfamiliar tasks, he is in charge of taking the dog for a walk everyday. That is a concrete objective that still gives in to the "being outdoors" school of thought.
If you live in a place without easy access to parks or hiking trails, take advantage of neighborhood walks. I promise you will see a difference in your child. According to Louv, "No one among us wants to be a member of the last generation to pass on to our children the joy of playing outside in nature."
visit www.childrenandnature.org. or http://richardlouv.com.
Stop and smell the roses!
Thursday, July 17, 2008
Our Buttons Are Poppin'
Our very own former governor Mike Huckabee is the guest host of the Paul Harvey radio show the week beginning July 15th. I suggest you check him out. He is a natural performer. We always knew that in Arkansas! Course there is that preacher side of him! www.paulharvey.com.
Huckabee (aka. "The Huck" or "Huckster") is a good ole' boy, so we are proud for him. He did a lot for education in our state and I have a picture of my daughter (who was born deaf) standing next to him as he signed the Universal Hearing Screening bill into law dictating that all hospitals birthing 50 babies or more a year provided a hearing screening.
My daughter was only three years old, and it was a banner day. Today, she is almost fourteen, has a cochlear implant, teaches dance to pre-schoolers and sings in her school choir.
Huckabee (aka. "The Huck" or "Huckster") is a good ole' boy, so we are proud for him. He did a lot for education in our state and I have a picture of my daughter (who was born deaf) standing next to him as he signed the Universal Hearing Screening bill into law dictating that all hospitals birthing 50 babies or more a year provided a hearing screening.
My daughter was only three years old, and it was a banner day. Today, she is almost fourteen, has a cochlear implant, teaches dance to pre-schoolers and sings in her school choir.
Crisis Situation
What I couldn't believe when my children were young was that the educators weren't interested in educaitng my children. Well, not all of them, and those who were allies wouldn't speak up during IEP meetings out of fear of losing their jobs.
My daughter was enrolled in a presechool co-op for special needs children and because she had not met the goals for the three years, we were wanting her to remain in the preschool rather than continue to kindergarten. After all, her birthday was Aug. 29th!
After a lengthy and costly due process hearing, we were no closer to coming to agreeable terms with the school district who basically received a slap on the wrist for the obstinant and antagonistic manner they chose to deal with us. In other words, the opinion of the ruling officer was that they were not breaking the law.
The school officials thought, perhaps, our daughter was not smart enough to talk. We saved her from that... we enrolled her at St. Joseph's Institute for the Deaf in St. Louis. A week before her fifth birthday, we left her in a dorm several hundred miles away from home.
Parents sacrifice in all kinds of ways, every day, for their children.
My daughter was enrolled in a presechool co-op for special needs children and because she had not met the goals for the three years, we were wanting her to remain in the preschool rather than continue to kindergarten. After all, her birthday was Aug. 29th!
After a lengthy and costly due process hearing, we were no closer to coming to agreeable terms with the school district who basically received a slap on the wrist for the obstinant and antagonistic manner they chose to deal with us. In other words, the opinion of the ruling officer was that they were not breaking the law.
The school officials thought, perhaps, our daughter was not smart enough to talk. We saved her from that... we enrolled her at St. Joseph's Institute for the Deaf in St. Louis. A week before her fifth birthday, we left her in a dorm several hundred miles away from home.
Parents sacrifice in all kinds of ways, every day, for their children.
Wednesday, July 16, 2008
Remembering the Day of the Diagnosis
When my daughter was diagnosed with a profound bilateral hearing loss (110 decibal loss in each ear), I was relieved. Ok, let me back up.
I had been observing her peculiar behaviors for months. I had three in diapers (she is a twin). Because of my past work finding jobs for handicapped adults, I was familiar with deafness. I wasn't completely sure it was a hearing loss we were dealing with.
She made noises that sounded like Mama, Dada, etc.. but her eyes were so wide open in all the photos I took. In hindsight, I knew she was "hearing" with her eyes - trying to see behind her.
She played apart from the boys (I thought it was becasue they kept stealing her pacifyer). She constantly rubbed the tablecloth and drapes across her cheeks (she was seeking stimulation).
My fear was that she was autistic or mildly retarded. I was relieved it was just hearing. I thought we could deal with that. Every disability has its hardships, and nothing worth fighting for is easy.
Be of courage!
I had been observing her peculiar behaviors for months. I had three in diapers (she is a twin). Because of my past work finding jobs for handicapped adults, I was familiar with deafness. I wasn't completely sure it was a hearing loss we were dealing with.
She made noises that sounded like Mama, Dada, etc.. but her eyes were so wide open in all the photos I took. In hindsight, I knew she was "hearing" with her eyes - trying to see behind her.
She played apart from the boys (I thought it was becasue they kept stealing her pacifyer). She constantly rubbed the tablecloth and drapes across her cheeks (she was seeking stimulation).
My fear was that she was autistic or mildly retarded. I was relieved it was just hearing. I thought we could deal with that. Every disability has its hardships, and nothing worth fighting for is easy.
Be of courage!
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