Shelley
Showing posts with label sensory processing disorder. Show all posts
Showing posts with label sensory processing disorder. Show all posts
Friday, January 18, 2013
It's our normal.
Evening homework/OT session at home. This time Rainbow joined in. Guess she didn't think the beanbag was heavy enough. :)
Shelley
Shelley
Tuesday, April 3, 2012
Ellie's signs of Autism
First let me say that the saying..."If you've met one person with Autism, you've met ONE person with Autism."...is so true. There are shared traits and symptoms, but it is a spectrum disorder. In other words, there's a large range of what Autism looks like. If you are concerned about a child, or even just curious, I encourage you to visit this site and take the quiz:
http://psychcentral.com/quizzes/autism.htm
To give you an idea, Ellie scored 46, with a score over 34 being "Likely Autism".
I'm listing some of the things about Ellie that were/are signs of her Autism. Some were "quirks", some were more serious. Looking back the one thing I'd do differently is listen to my first instinct to seek outside help. It came after talking to a friend over a year before I finally made the call. Calling a counselor is NOT a sign of weakness, in fact I think it takes strength to seek help. A quick Google search of "Autism Therapists" in your area should turn up some leads of who to call. Even a good family counselor can help by giving you some leads. The first person we saw was a family counselor, who within 5 minutes knew we were dealing with sensory problems and possibly more. The one we currently see suspected within one session that Ellie had Asperger's. These people know what to look for, they are experts, most parents are not.
Ellie's signs/symptoms:
-Funny crawl as a baby.
-Didn't cross her midline. Now this one was tricky, I thought she did, even Parents as Teachers didn't catch it. However, when she was evaluated by an OT, someone trained to watch more carefully, we found out she wasn't. She had adapted her body to look like she was. She would turn so she never actually crossed her body's midline. She would twist her paper so she wouldn't cross the midline while she was writing.
-Clumsy, uncoordinated. Ellie hated stairs, and would often bump into things.
-Removes herself from social situations. When other children come over to play she enjoys them being around, but will remove herself from them quickly and go do something by herself.
-Avoids loud noises, covers her ears. Ellie hates music shows and school assemblies.
-Odd aversions to clothing and textures (sensory issues) starting as a toddler (age 2 1/2) Beyond the typical "I don't like socks" She couldn't tolerate underwear, socks, anything fitted, tags, or having her hair brushed.
-Lots of social problems with other children starting very young, age 1 1/2. Even with age she didn't improve much. She didn't play well with others. She overreacted to situations. She spent a lot of time in time outs at home, preschool, kindergarten, yet that didn't change her behavior. Something I think is key here: Children inherently want to please their parents. And they want to be happy. Yes they will challenge us, but they want to make us happy. If their behavior doesn't change with discipline, or if they seem unable to change their behavior even when they really want to, those are warning signs. I remember just being flabbergasted when Ellie was 3 and she wouldn't wear socks on a cold day to preschool. I thought she was just being extremely stubborn. She was supposed to be going on an outdoor field trip, one that she'd been looking forward to for awhile. I told her she couldn't go if she didn't wear socks, and she sobbed and sobbed but couldn't bear to put socks on. I didn't let her go, and family and friends praised my strength in "standing my ground", but now I realize she wasn't being stubborn at all. She was in agony. That same scene has played out many times since then. Even when she wants to be good, or go somewhere fun, she just can't comply for some reason.
-Meltdowns over chairs being too close to tables at home and restaurants.
-Comments from teachers like - "I've never had a child like her."
-Extreme interest in one or two subjects. For Ellie it's animals, especially cats.
-Extremely detailed. Has a memory of steel. Notices things no one else does.
-Monopolizes the conversation. Doesn't allow the normal give and take of a conversation, doesn't notice if the other person is bored or annoyed.
-No imaginary play. Really no actual "play". Ellie collects things like dolls, but doesn't play with them like Annie does. She dresses them in "season appropriate outfits", and lines them up on her shelves. She never liked dress-up or pretend play.
-Very practical. Reads only non-fiction books like informational books about animals. I read lots of fictional books to her, but as she grew older and made her own choices, she only chose non-fiction.
-Described by us and others as a "little adult". Relates better to adults or those much younger than herself, than she does with peers.
-Seems to need to control everything. This was one reason why people (including us at times) thought she was just very strong willed.
-Doesn't handle change well. Does much better on a schedule. New places, especially loud/busy places, often sent her into a meltdown.
-Lots of meltdowns. Not just at home, in fact more often in public places. When I think of all the places we dragged her, changes of schedule we threw at her, sensory overloading environments we put her in...mercy. Of course she was always screaming. She isn't wired to handle any of it.
Ok, so that's some of it. :) As I look back on this cumulative list I think, How could I have not seen it sooner? But I remember that I didn't look at it all together like I do now. And even if I had, I wouldn't have known what I was looking at. All I saw then was a very difficult, very troubled child. This is why we need awareness.
Please don't hesitate to share this, or ask me any questions you might have. I am by far not an expert, but I am happy to help anyone in any way I can. :-)
Blessings,
Shelley
http://psychcentral.com/quizzes/autism.htm
To give you an idea, Ellie scored 46, with a score over 34 being "Likely Autism".
I'm listing some of the things about Ellie that were/are signs of her Autism. Some were "quirks", some were more serious. Looking back the one thing I'd do differently is listen to my first instinct to seek outside help. It came after talking to a friend over a year before I finally made the call. Calling a counselor is NOT a sign of weakness, in fact I think it takes strength to seek help. A quick Google search of "Autism Therapists" in your area should turn up some leads of who to call. Even a good family counselor can help by giving you some leads. The first person we saw was a family counselor, who within 5 minutes knew we were dealing with sensory problems and possibly more. The one we currently see suspected within one session that Ellie had Asperger's. These people know what to look for, they are experts, most parents are not.
Ellie's signs/symptoms:
-Funny crawl as a baby.
-Didn't cross her midline. Now this one was tricky, I thought she did, even Parents as Teachers didn't catch it. However, when she was evaluated by an OT, someone trained to watch more carefully, we found out she wasn't. She had adapted her body to look like she was. She would turn so she never actually crossed her body's midline. She would twist her paper so she wouldn't cross the midline while she was writing.
-Clumsy, uncoordinated. Ellie hated stairs, and would often bump into things.
-Removes herself from social situations. When other children come over to play she enjoys them being around, but will remove herself from them quickly and go do something by herself.
-Avoids loud noises, covers her ears. Ellie hates music shows and school assemblies.
-Odd aversions to clothing and textures (sensory issues) starting as a toddler (age 2 1/2) Beyond the typical "I don't like socks" She couldn't tolerate underwear, socks, anything fitted, tags, or having her hair brushed.
-Lots of social problems with other children starting very young, age 1 1/2. Even with age she didn't improve much. She didn't play well with others. She overreacted to situations. She spent a lot of time in time outs at home, preschool, kindergarten, yet that didn't change her behavior. Something I think is key here: Children inherently want to please their parents. And they want to be happy. Yes they will challenge us, but they want to make us happy. If their behavior doesn't change with discipline, or if they seem unable to change their behavior even when they really want to, those are warning signs. I remember just being flabbergasted when Ellie was 3 and she wouldn't wear socks on a cold day to preschool. I thought she was just being extremely stubborn. She was supposed to be going on an outdoor field trip, one that she'd been looking forward to for awhile. I told her she couldn't go if she didn't wear socks, and she sobbed and sobbed but couldn't bear to put socks on. I didn't let her go, and family and friends praised my strength in "standing my ground", but now I realize she wasn't being stubborn at all. She was in agony. That same scene has played out many times since then. Even when she wants to be good, or go somewhere fun, she just can't comply for some reason.
-Meltdowns over chairs being too close to tables at home and restaurants.
-Comments from teachers like - "I've never had a child like her."
-Extreme interest in one or two subjects. For Ellie it's animals, especially cats.
-Extremely detailed. Has a memory of steel. Notices things no one else does.
-Monopolizes the conversation. Doesn't allow the normal give and take of a conversation, doesn't notice if the other person is bored or annoyed.
-No imaginary play. Really no actual "play". Ellie collects things like dolls, but doesn't play with them like Annie does. She dresses them in "season appropriate outfits", and lines them up on her shelves. She never liked dress-up or pretend play.
-Very practical. Reads only non-fiction books like informational books about animals. I read lots of fictional books to her, but as she grew older and made her own choices, she only chose non-fiction.
-Described by us and others as a "little adult". Relates better to adults or those much younger than herself, than she does with peers.
-Seems to need to control everything. This was one reason why people (including us at times) thought she was just very strong willed.
-Doesn't handle change well. Does much better on a schedule. New places, especially loud/busy places, often sent her into a meltdown.
-Lots of meltdowns. Not just at home, in fact more often in public places. When I think of all the places we dragged her, changes of schedule we threw at her, sensory overloading environments we put her in...mercy. Of course she was always screaming. She isn't wired to handle any of it.
Ok, so that's some of it. :) As I look back on this cumulative list I think, How could I have not seen it sooner? But I remember that I didn't look at it all together like I do now. And even if I had, I wouldn't have known what I was looking at. All I saw then was a very difficult, very troubled child. This is why we need awareness.
Please don't hesitate to share this, or ask me any questions you might have. I am by far not an expert, but I am happy to help anyone in any way I can. :-)
Blessings,
Shelley
Thursday, November 10, 2011
Our journey with Ellie...
Part of my bloggy silence in the last several months has been due to a journey we've been on with Ellie. I have been silent about it, because I wanted to wait for answers. I wanted to have details to share, maybe even wisdon to impart...Ha! :) In all seriousness though, it's been a very rough road with Ellie since spring, and last June after doing some research, I set out on a path to get some serious answers.
Autism. It's a scary word, but a word that has become increasingly familiar to me in the last several months.
In August we started seeing a family counselor to explore what was going on with Ellie. Yes, she has Sensory Processing Disorder, and we have had our challenges with her in that regard, but for awhile we felt like we had things somewhat under control. Starting in the spring, and continuing over the summer Ellie slid into a bad place. Her sensory problems increased, her meltdowns increased, she became angry, sad, anxious, fearful. As school started, her problems hit an all time high. She cried for an hour before school, and an hour after school. Socially she has had an extremely rough year, not being able to handle other kids, not understanding social rules, not functioning as a typical 4th grade girl. Not even close. The possibility of an Autism Spectrum Disorder was immediately brought up, and so we began walking a new path.
We're still on this path, with all it's twists and turns and looong waits to see doctors and therapists, and have numerous evaluations done, but we finally got the first of our answers yesterday. After weeks of testing, Ellie's school has diagnosed her with Autism.
Now, if you know Ellie at arms length, you may be confused. She appears at first glance to be a very "normal" child. But if you watch her, really watch her, you will see the differences. She does not play, she does not understand social rules, she is extremely detailed, she cannot tolerate changes in routine. She is not Autistic, in the "Rain Man" sense. She is very high functioning, with her major areas of concern and delay being in social areas, sensory areas, and gross motor areas. She now has an IEP in place, that spells out her needs, and what special services she will receive. OT, Language therapy, Social Skills training, etc.
We are still waiting for a more specific diagnosis, which will come from an independent neuro-psych evaluation that is scheduled at the beginning of December. That's the "big one" in my head, the one that will give us more direction. For now though, I feel that we're on the right path. The counselor/therapist that we're seeing specializes in Autism Spectrum Disorders, and he and the school feel that we're heading in the right direction. I have struggled with this, prayed over this, cried and lost so much sleep over this, but I do feel like we're getting there.
Of course I don't want my child to have Autism, but I do want her to get the help she so desperately needs. I am counting her diagnosis as a victory. She is a bright, beautiful girl, and with a little help, I think she will use her special needs and special talents to become a wonderful help to others someday.
To be continued... :)
Autism. It's a scary word, but a word that has become increasingly familiar to me in the last several months.
In August we started seeing a family counselor to explore what was going on with Ellie. Yes, she has Sensory Processing Disorder, and we have had our challenges with her in that regard, but for awhile we felt like we had things somewhat under control. Starting in the spring, and continuing over the summer Ellie slid into a bad place. Her sensory problems increased, her meltdowns increased, she became angry, sad, anxious, fearful. As school started, her problems hit an all time high. She cried for an hour before school, and an hour after school. Socially she has had an extremely rough year, not being able to handle other kids, not understanding social rules, not functioning as a typical 4th grade girl. Not even close. The possibility of an Autism Spectrum Disorder was immediately brought up, and so we began walking a new path.
We're still on this path, with all it's twists and turns and looong waits to see doctors and therapists, and have numerous evaluations done, but we finally got the first of our answers yesterday. After weeks of testing, Ellie's school has diagnosed her with Autism.
Now, if you know Ellie at arms length, you may be confused. She appears at first glance to be a very "normal" child. But if you watch her, really watch her, you will see the differences. She does not play, she does not understand social rules, she is extremely detailed, she cannot tolerate changes in routine. She is not Autistic, in the "Rain Man" sense. She is very high functioning, with her major areas of concern and delay being in social areas, sensory areas, and gross motor areas. She now has an IEP in place, that spells out her needs, and what special services she will receive. OT, Language therapy, Social Skills training, etc.
We are still waiting for a more specific diagnosis, which will come from an independent neuro-psych evaluation that is scheduled at the beginning of December. That's the "big one" in my head, the one that will give us more direction. For now though, I feel that we're on the right path. The counselor/therapist that we're seeing specializes in Autism Spectrum Disorders, and he and the school feel that we're heading in the right direction. I have struggled with this, prayed over this, cried and lost so much sleep over this, but I do feel like we're getting there.
Of course I don't want my child to have Autism, but I do want her to get the help she so desperately needs. I am counting her diagnosis as a victory. She is a bright, beautiful girl, and with a little help, I think she will use her special needs and special talents to become a wonderful help to others someday.
To be continued... :)
Thursday, April 1, 2010
Ellie: One Year Later
I wrote this post one year ago today. That was a tough thing to write. When I wrote that, we were still in a very hard place with Ellie. We had some hope, but I was skeptical. Daily life was still very unpredictable with our girl. I prayed, and I waited to BE AMAZED.
We started weekly OT (Occupational Therapy) right about the time I wrote that post. We continued it through the summer. Every week I learned something new. I learned how much her Sensory Processing Disorder (SPD) affected every aspect of her life. I learned what a midline was, and why the fact that she couldn't cross hers, was very significant. I learned why she struggled with stairs, handwriting, crowds of people, clothes, noises, riding in the car, and much, much more.
She worked hard through the summer, and we started seeing the benefits of therapy after a couple of months. We learned a lot about our girl, and how her brain works. I wasn't AMAZED yet, but I was more and more hopeful. Ellie started second grade, and I was humbled and blessed that she was able to start OT at school, as well as continue with her private therapy. That's when the changes really started making themselves visible to me.
In one year she really has become a new child. She's been an Honor Role student, and, as her teacher said, an "Asset to her class"! We've recently gone to having our private OT every other week, and that's working out well. The plan is to continue that for a few more months, and she'll continue to receive OT at school for awhile.
On our Mini-Vacation, Ellie did awesome! I was so proud of her, she handled crowds, noises, car rides, like a pro! She was helpful, sweet, and happy most of the time. We had a couple of moments when she got a little overwhelmed, but she was able to get through it, which is amazing. A year ago I was dragging a kicking and screaming girl out of a restaurant, now she is able to talk to me, tell me what she needs, and as a result, calm herself down. WOW!
They were right, I have been AMAZED. Thank you God! My prayers have been answered, my fears have been dismissed. We've been blessed with an incredible teacher this year, and a school that acted quickly to help our girl. We were blessed with an extension from our insurance that allowed Ellie to continue her private therapy, which has been Wonderful. As I look back, I can see God's hand guiding us along, and clearing the path for us. I am so proud of Ellie's hard work. She's learning a lot about herself, and I know God will use these experiences of hers for something really AMAZING someday!
I can't wait to see how she grows in this next year! I am so excited to see what's next for our AMAZING girl!
She worked hard through the summer, and we started seeing the benefits of therapy after a couple of months. We learned a lot about our girl, and how her brain works. I wasn't AMAZED yet, but I was more and more hopeful. Ellie started second grade, and I was humbled and blessed that she was able to start OT at school, as well as continue with her private therapy. That's when the changes really started making themselves visible to me.
In one year she really has become a new child. She's been an Honor Role student, and, as her teacher said, an "Asset to her class"! We've recently gone to having our private OT every other week, and that's working out well. The plan is to continue that for a few more months, and she'll continue to receive OT at school for awhile.
On our Mini-Vacation, Ellie did awesome! I was so proud of her, she handled crowds, noises, car rides, like a pro! She was helpful, sweet, and happy most of the time. We had a couple of moments when she got a little overwhelmed, but she was able to get through it, which is amazing. A year ago I was dragging a kicking and screaming girl out of a restaurant, now she is able to talk to me, tell me what she needs, and as a result, calm herself down. WOW!
They were right, I have been AMAZED. Thank you God! My prayers have been answered, my fears have been dismissed. We've been blessed with an incredible teacher this year, and a school that acted quickly to help our girl. We were blessed with an extension from our insurance that allowed Ellie to continue her private therapy, which has been Wonderful. As I look back, I can see God's hand guiding us along, and clearing the path for us. I am so proud of Ellie's hard work. She's learning a lot about herself, and I know God will use these experiences of hers for something really AMAZING someday!
I can't wait to see how she grows in this next year! I am so excited to see what's next for our AMAZING girl!
Monday, July 27, 2009
Go Ellie!
Dear Ellie,
You amazed me today. Today you learned how to ride your bike without training wheels! That in itself is quite a childhood feat to accomplish for anyone, but for you? For you it was amazing!
You, my girl who fears so many things, faced your fear of getting hurt. You overcame your fear of trying something new. You WILLED yourself on. You actually looked at me a few minutes after we started trying and said...
"Mommy, if I tell myself I can do it, I CAN."
Oh the wisdom of a child sometimes!
Then, as we proceeded quickly from me holding you with two hands, to me holding you with one, to me gently laying a hand on your back, I heard your sweet voice. Almost a whisper, saying...
"I can do it, I can do it, I can do it!"
Tears filled my eyes over your belief in yourself.
You've struggled with so many things that come easily to most children. Life has been difficult for you, but you have persevered. In the past few months you've been improving week by week. You've worked hard at your Occupational Therapy, and we can really see a difference in you in many ways. Today when you took off on your own, and I watched you balance yourself so well, I realized how far you've come. Just Awesome.
After a few tries with some help from mommy and daddy, you took off! I was afraid you would be scared for me to let go, but NO! You just kept riding!
You are going to go far my girl!
And as we wrapped things up, both of us exhausted from the fun and excitement of the day, you looked at me and said...
"Now can I get a NEW BIKE??!!"
HA!
Yeah, that's my girl! And I wouldn't have you any other way.
Love, Mommy
You amazed me today. Today you learned how to ride your bike without training wheels! That in itself is quite a childhood feat to accomplish for anyone, but for you? For you it was amazing!
You, my girl who fears so many things, faced your fear of getting hurt. You overcame your fear of trying something new. You WILLED yourself on. You actually looked at me a few minutes after we started trying and said...
"Mommy, if I tell myself I can do it, I CAN."
Oh the wisdom of a child sometimes!
Then, as we proceeded quickly from me holding you with two hands, to me holding you with one, to me gently laying a hand on your back, I heard your sweet voice. Almost a whisper, saying...
"I can do it, I can do it, I can do it!"
Tears filled my eyes over your belief in yourself.
You've struggled with so many things that come easily to most children. Life has been difficult for you, but you have persevered. In the past few months you've been improving week by week. You've worked hard at your Occupational Therapy, and we can really see a difference in you in many ways. Today when you took off on your own, and I watched you balance yourself so well, I realized how far you've come. Just Awesome.
After a few tries with some help from mommy and daddy, you took off! I was afraid you would be scared for me to let go, but NO! You just kept riding!
You are going to go far my girl!
And as we wrapped things up, both of us exhausted from the fun and excitement of the day, you looked at me and said...
"Now can I get a NEW BIKE??!!"
HA!
Yeah, that's my girl! And I wouldn't have you any other way.
Love, Mommy
Wednesday, April 1, 2009
Mi Vida Loca
I think that means "My crazy life."
I hope so, otherwise I have no idea what my title is!
I have been a little silent lately on this sweet blog of mine. I blame my silence on many reasons...exhaustion, being over-scheduled, facebook...but there's more too it than that. I've been in limbo.
Waiting, waiting, waiting to be able to put some real information on here about what's been going on in our lives. Waiting until I had some answers, or at least a better understanding. So now I'm jumping in with both feet.
Ellie.
Ellie has officially been diagnosed with Sensory Processing Disorder (SPD). SPD is a neurological disorder that affects how you process the sensations that your body receives. The disorder part comes into play when the brain doesn't process the sensation correctly, and therefore doesn't produce a correct response. Basically there's a "glitch" in the system. This has been a long time coming for us, too long in fact. She's always been our challenge, our "quirky" kid, our handful. She's had many clothing issues (remember the panties!), and behavioral issues for a VERY long time. I heard of SPD a couple of years ago, thought about it, and dismissed it. Then again about a year ago, this time I wasn't as quick to dismiss it, but still wasn't convinced we needed outside help.
Then we went to Disney.
Yeah.
Bad.
So, long story short, this is what our girl has. I am amazed at how many things she's always had issues with, that play into this disorder. Things I never dreamed about being sensory issues. Like her dislike for amusement park rides, or her difficulty with stairs, or her failure to progress well at handwriting...all a part.
The treatment is Occupational Therapy, and is supposed to be quite successful. The Occupational Therapist says we will be AMAZED in just a couple of months at how much better Ellie is going to be. That we will be AMAZED and have a totally different kid on our hands by next August when school starts back up.
Let me tell you, I am ready to be AMAZED!!!
It's been a tough road for our girl. And us. She gets very angry, she gets very aggressive, she melts down in public, she makes us walk on pins and needles all the time. Always wondering if we're going to do something to "set her off." Always trying to think ahead...Will Ellie be able to handle this? All of that is supposed to get better, and even go completely away with the occupational therapy.
It's hard for me to imagine that one hour a week of this therapy, which is basically playing with purpose, will completely change our girl. But they are the experts. They are the ones who have seen kids like Ellie, so I will choose to believe them and wait to BE AMAZED!
Oh please AMAZE me!
This disorder is hard to understand. Even for me, and I've been reading everything I can find on it! But I came across this info, and I liked the way it was worded. It helps me to view this from her perspective. I put in bold the things that are the most challenging for her. It's hard for me to realize how much she's struggling, heartbreaking in fact. But we're on the right path now, and that feels good. See what you think...
Stanley Greenspan, the author of "The Challenging Child" (1995) has an insightful analogy to help us understand what people experience when they can not effectively process, or interpret, sensory input.
He describes it this way: "Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."
It's no wonder children with sensory processing disorders feel out of control, exhibit a whole host of behaviors, and have difficulty concentrating and focusing at school!
Now, also imagine being a parent of one of these children. Many parents have expressed how exhausted, rejected, lost, incompetent and alone they feel in trying to live with, and understand, their child.
I challenge you to remember this beautifully painful quote the next time you encounter a child with sensory processing disorders and begin the process of awareness, understanding, and treatment to help them take control of their bodies, minds and self-esteem.
It is so very difficult for them. Let's acknowledge that and do our best to understand and help them!
Let me put this another way for you, from an adult perspective.
I once did a presentation in a conference room full of adults that worked in day care and preschool settings. I wanted them to relate to and understand the children they saw in their classrooms that struggled with sensory processing disorders.
I explained it to them this way...
Imagine if:
You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.
You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair and you fell off 3 times during this training.
Your clothes felt like they were made of fiberglass.
You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.
Every time you tried to write with your pencil, it broke because you pushed too hard.
The different smells in this room made you utterly nauseous.
The humming of the lights sounded louder than my voice.
You couldn't focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.
The lights are so bright you have to squint, then you get a pounding headache half way through the presentation
Every time someone touches you, it feels like they are rubbing sandpaper on your skin.
You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.
People's whispers sounded like they were yelling.
The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.
You had to pull the car over 3 times on the ride here because the motion makes you sick.
So that's where we are. That's what we're dealing with. And I am ready to Be Amazed!
And the crazy life continues with Austin and the saga of the ears. He's getting tubes put in on Friday, so I'll be updating on that soon!
I hope so, otherwise I have no idea what my title is!
I have been a little silent lately on this sweet blog of mine. I blame my silence on many reasons...exhaustion, being over-scheduled, facebook...but there's more too it than that. I've been in limbo.
Waiting, waiting, waiting to be able to put some real information on here about what's been going on in our lives. Waiting until I had some answers, or at least a better understanding. So now I'm jumping in with both feet.
Ellie.
Ellie has officially been diagnosed with Sensory Processing Disorder (SPD). SPD is a neurological disorder that affects how you process the sensations that your body receives. The disorder part comes into play when the brain doesn't process the sensation correctly, and therefore doesn't produce a correct response. Basically there's a "glitch" in the system. This has been a long time coming for us, too long in fact. She's always been our challenge, our "quirky" kid, our handful. She's had many clothing issues (remember the panties!), and behavioral issues for a VERY long time. I heard of SPD a couple of years ago, thought about it, and dismissed it. Then again about a year ago, this time I wasn't as quick to dismiss it, but still wasn't convinced we needed outside help.
Then we went to Disney.
Yeah.
Bad.
So, long story short, this is what our girl has. I am amazed at how many things she's always had issues with, that play into this disorder. Things I never dreamed about being sensory issues. Like her dislike for amusement park rides, or her difficulty with stairs, or her failure to progress well at handwriting...all a part.
The treatment is Occupational Therapy, and is supposed to be quite successful. The Occupational Therapist says we will be AMAZED in just a couple of months at how much better Ellie is going to be. That we will be AMAZED and have a totally different kid on our hands by next August when school starts back up.
Let me tell you, I am ready to be AMAZED!!!
It's been a tough road for our girl. And us. She gets very angry, she gets very aggressive, she melts down in public, she makes us walk on pins and needles all the time. Always wondering if we're going to do something to "set her off." Always trying to think ahead...Will Ellie be able to handle this? All of that is supposed to get better, and even go completely away with the occupational therapy.
It's hard for me to imagine that one hour a week of this therapy, which is basically playing with purpose, will completely change our girl. But they are the experts. They are the ones who have seen kids like Ellie, so I will choose to believe them and wait to BE AMAZED!
Oh please AMAZE me!
This disorder is hard to understand. Even for me, and I've been reading everything I can find on it! But I came across this info, and I liked the way it was worded. It helps me to view this from her perspective. I put in bold the things that are the most challenging for her. It's hard for me to realize how much she's struggling, heartbreaking in fact. But we're on the right path now, and that feels good. See what you think...
Stanley Greenspan, the author of "The Challenging Child" (1995) has an insightful analogy to help us understand what people experience when they can not effectively process, or interpret, sensory input.
He describes it this way: "Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."
It's no wonder children with sensory processing disorders feel out of control, exhibit a whole host of behaviors, and have difficulty concentrating and focusing at school!
Now, also imagine being a parent of one of these children. Many parents have expressed how exhausted, rejected, lost, incompetent and alone they feel in trying to live with, and understand, their child.
I challenge you to remember this beautifully painful quote the next time you encounter a child with sensory processing disorders and begin the process of awareness, understanding, and treatment to help them take control of their bodies, minds and self-esteem.
It is so very difficult for them. Let's acknowledge that and do our best to understand and help them!
Let me put this another way for you, from an adult perspective.
I once did a presentation in a conference room full of adults that worked in day care and preschool settings. I wanted them to relate to and understand the children they saw in their classrooms that struggled with sensory processing disorders.
I explained it to them this way...
Imagine if:
You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.
You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair and you fell off 3 times during this training.
Your clothes felt like they were made of fiberglass.
You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.
Every time you tried to write with your pencil, it broke because you pushed too hard.
The different smells in this room made you utterly nauseous.
The humming of the lights sounded louder than my voice.
You couldn't focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.
The lights are so bright you have to squint, then you get a pounding headache half way through the presentation
Every time someone touches you, it feels like they are rubbing sandpaper on your skin.
You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.
People's whispers sounded like they were yelling.
The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.
You had to pull the car over 3 times on the ride here because the motion makes you sick.
So that's where we are. That's what we're dealing with. And I am ready to Be Amazed!
And the crazy life continues with Austin and the saga of the ears. He's getting tubes put in on Friday, so I'll be updating on that soon!
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