So I have been up to my ears with potty training these last few weeks. We have been training Scarlet since the summer and quite frequently, Skye will jump on the bandwagon. It has been very interesting around my house lately as I have been bouncing from one accident to the other. Potty training a special needs child has been a far bigger task than I ever imagined. I feel rather determined to do it since the specialist who diagnosed her said she would never be potty trained! I am trying to keep this blog real....so, I have composed, or rather re-written a song. I needed to add a bit of humor. If you have long past the point of potty training and would rather it remain a far distant memory, then just skip this blog. If you are relatively near a potty training experience, then perhaps this song is just the thing you need. If you have never had the pleasure of living through a potty training experience then you might find my reference to bodily fluids a bit over the top...to you I apologize and ask you to venture no farther on the page. To the rest, may this resonate! It is to the tune of Sinead O'Connor's song, "Nothing Compares To You"....
It's been seven months and twenty days
Since I took all the diapers away OOOOOOO
Since they've been gone it can flow wherever it wants
It can hide in corners of rooms
We're stayin' away from fancy restaurants
Stayin away from curtains and couches too
Cause nothin'
I said nothin' compares
Nothin' compares to poo
We go out and I'm nervous
When I stay in, I wait,
For a tell-tale sign or two OOOOO
Nothin' can stop me as I yell "wait!" "wait!"
"Just keep on holdin' it in!!"
I think I'm faster now than when I was eighteen
But it's been months of living on the edge
I keep talkin' to the therapists and guess what they told me
Guess what they told me
They said don't go back to diapers, girl, whatever you do
It's just so cruel
Cause nothin compares
Nothin' compares to poo
All the undies that I'm washing, mama, in the laundry room
Aren't going to go away!
I know that potty trainin', baby, is sometimes hard
So I hope it ends real soon
Cause
Nothin' compares
Nothin' compares
Nothin' compares
Nothin' compares
to poo.
Saturday, October 31, 2009
Tuesday, October 13, 2009
I saw the sign!
There are times, with an autistic child, that all the daily trudging up and up some uncharted mountain pays off. Days when an unexpected rainbow surrounds the summit. Days when you know it was worth it to take the hard way up. Today was one of those days. And let me first say that today's particular summit was reached with significant help from my fabulous S.T.E.P.S therapists. (Our current in-home IBI providers, Ashley, Jenn, Natalie, Shawna, Deanna and Laura)
To appreciate this particular summit, to feel the exhilaration and to know the profound sense of achievement I need to explain the journey. I promise it will not be the documentary version...a quick pan through the last few years will do the trick. Scene begins in a living room, with a little blond, curly headed Scarlet screaming and thrashing, banging her head. No one knows why, there is little to do but wait out the tantrum and hope that it ends soon. I try to only respond or give Scarlet what she wants if she is attempting some sort of verbal sound. I can not keep up to the demand that this method takes and give up trying. A year later, same little cutie, just taller pulling out her hair in frustration. She is far removed from her world. It is my full time job just to engage her, to keep her in touch with her reality instead of pulling out her hair and looking out of the window. Therapists come to our house and try to teach her to communicate what she needs by pulling pictures off a page and handing them to me. I know Scarlet is capable of more than this, but they tell me this is the only option. Several months later, Scarlet is requesting familiar food items using the pictures at nursery school and the Achimota center, but finds it hard to incorporate into daily life at home.
Several months later, we feel a change in Scarlet's therapy is needed. We pray. God sends three different people to us with the name of S.T.E.P.S. We love the positive attitudes of Deanna and Laura the ladies who run S.T.E.P.S. We love that they can see a side of Scarlet that few can. We know they are a good fit. They send their therapists Shawna, Natalie, Jenn, and Ashley to our house every day for months. They teach Scarlet her first signs eat and drink, then bread. These signs are repeated several times a day with prompts like: show me eat, show me drink, or what do you want? Scarlet then responds with the appropriate signs. When Scarlet starts to sign the first time for eat all by herself we are at the grocery store in the produce section.... It was the first time since Scarlet lost her words that she had been able to communicate her thoughts to me. Three years of silence, then an "eat" sign....wait that was a summit but there is a bigger one coming.
Tonight at the dinner table, Scarlet was furious. She was kicking and crying and banging her head and refusing to eat anything but green beans. She was spitting out everything that I tried to feed her. She clearly had a strong aversion to supper. Once I realized that she was trying to communicate that she didn't like what we were having to eat, I calmed her down and told her that I would make her a sandwich. I took supper, ground it up and added mayonnaise then put it in her bread for a sandwich. She loved her sandwich and gobbled up three helpings. I had run out of bread, so I didn't give her any more. I figured she was done. That is when Scarlet came up to me slapped her hands together in her "bread" sign and SAID "Bread". I screamed and jumped and make all kinds of ruckus. She jumped up and down and squealed with delight that I had understood her. We had a celebration!!! A fresh, mountain air, lofty mountain peak, It-was- worth-every-step-of-the-climb kind of celebration. I think I even yodeled!
"Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows." James 1:17
Thank you, Jesus
To appreciate this particular summit, to feel the exhilaration and to know the profound sense of achievement I need to explain the journey. I promise it will not be the documentary version...a quick pan through the last few years will do the trick. Scene begins in a living room, with a little blond, curly headed Scarlet screaming and thrashing, banging her head. No one knows why, there is little to do but wait out the tantrum and hope that it ends soon. I try to only respond or give Scarlet what she wants if she is attempting some sort of verbal sound. I can not keep up to the demand that this method takes and give up trying. A year later, same little cutie, just taller pulling out her hair in frustration. She is far removed from her world. It is my full time job just to engage her, to keep her in touch with her reality instead of pulling out her hair and looking out of the window. Therapists come to our house and try to teach her to communicate what she needs by pulling pictures off a page and handing them to me. I know Scarlet is capable of more than this, but they tell me this is the only option. Several months later, Scarlet is requesting familiar food items using the pictures at nursery school and the Achimota center, but finds it hard to incorporate into daily life at home.
Several months later, we feel a change in Scarlet's therapy is needed. We pray. God sends three different people to us with the name of S.T.E.P.S. We love the positive attitudes of Deanna and Laura the ladies who run S.T.E.P.S. We love that they can see a side of Scarlet that few can. We know they are a good fit. They send their therapists Shawna, Natalie, Jenn, and Ashley to our house every day for months. They teach Scarlet her first signs eat and drink, then bread. These signs are repeated several times a day with prompts like: show me eat, show me drink, or what do you want? Scarlet then responds with the appropriate signs. When Scarlet starts to sign the first time for eat all by herself we are at the grocery store in the produce section.... It was the first time since Scarlet lost her words that she had been able to communicate her thoughts to me. Three years of silence, then an "eat" sign....wait that was a summit but there is a bigger one coming.
Tonight at the dinner table, Scarlet was furious. She was kicking and crying and banging her head and refusing to eat anything but green beans. She was spitting out everything that I tried to feed her. She clearly had a strong aversion to supper. Once I realized that she was trying to communicate that she didn't like what we were having to eat, I calmed her down and told her that I would make her a sandwich. I took supper, ground it up and added mayonnaise then put it in her bread for a sandwich. She loved her sandwich and gobbled up three helpings. I had run out of bread, so I didn't give her any more. I figured she was done. That is when Scarlet came up to me slapped her hands together in her "bread" sign and SAID "Bread". I screamed and jumped and make all kinds of ruckus. She jumped up and down and squealed with delight that I had understood her. We had a celebration!!! A fresh, mountain air, lofty mountain peak, It-was- worth-every-step-of-the-climb kind of celebration. I think I even yodeled!
"Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows." James 1:17
Thank you, Jesus
Wednesday, October 7, 2009
Sepia toned moments
Seems like I am always blogging out my frustrations, so I decided to blog out some happiness today. This week has been a relatively calm week filled with little achievements.
Little moments that make time stand still in a sepia toned slow motion before color starts blurring in fast motion all around. I love those time stand still moments. Its like being in a movie with the soft lense on a shot of particular emotional import and hearing the director yell "it's a take!" Not that I have ever been on a movie set and hear a director say those things, but I can imagine it feels much the same.
This week Scarlet has seemed so alive. There is more sparkle to her eyes and more mischief in her smile. She has just learned how to hold a cup up to her mouth and make sounds. She loves the distortion on the sound from the cup. I found her playing with a little green cup this week and I laughed at her. She thought it was funny that I would laugh at her and she likes making people laugh. When I told her to show her Daddy her funny cup noises, she put her cup up to her mouth and made her sounds then looked proudly around the room. For a moment she was Jerry Seinfeld and we were the audience laughing at her jokes.
Scarlet has a big white teddy bear on her bed. This teddy bear has recently become a real favorite of hers. I have heard her laughing in her room and walked in to see her holding her teddy bear. This is one of the few times I have seen her play appropriately with a toy! Imagine my delight as she said "Tedydy dydydy Bear" yesterday. It became her word of choice for the day. She was so proud of herself and looked up at me with a huge smile when I celebrated her achievement. Here's hoping it is a word she can find every day.
"Book,book, book", she says every night for a month at bedtime. She loves reading books. It is next in her heart only to bathtime. I am so elated that "book" has become a regular word that she has been using consitantly. She is so cute in her pajamas running around repeating book, book, book.
"Roar! I am a hungry Lion" I say as I lumber around the living room on all fours. Scarlet looks strangely at me as if seeing me do such a thing for the first time. She giggles. Nice, belly giggles that fill a room full of bubbles. When I reach for her to gobble her up she breaks out in peels of laughter. I am seen impersonating lions very frequently these days.
School is going well and Scarlet looks forward to going to school every "B" day. Her teacher is going to have Scarlet teach her classroom sign language, so that her peers can comunicate with her.
Scarlet fell, slippery socks on hard wood floors are like raisins with ground beef...not a great combination. Scarlet cries out right away and burries her head in my chest for comfort. She wants to stay with me and let me make a fuss over her. She acutally milks the moment a task usually undertaken by her sister. This is huge!!!!! This is the girl that often doesn't acknowledge pain. To acknowledge it, cry out for comfort, and to want that comfort to continue....it's huge!
Brynn kisses my face as I read him "The Horse and His Boy", he tells me that he loves me. Skye trips around the house like an elf looking for her Little People and asking to color. I find her coloring Scarlet's legs and pants and shirt as she declares that she can color on people. These little moments are like gumballs laid out on a trail through the forest. They make the journey worth taking.
Little moments that make time stand still in a sepia toned slow motion before color starts blurring in fast motion all around. I love those time stand still moments. Its like being in a movie with the soft lense on a shot of particular emotional import and hearing the director yell "it's a take!" Not that I have ever been on a movie set and hear a director say those things, but I can imagine it feels much the same.
This week Scarlet has seemed so alive. There is more sparkle to her eyes and more mischief in her smile. She has just learned how to hold a cup up to her mouth and make sounds. She loves the distortion on the sound from the cup. I found her playing with a little green cup this week and I laughed at her. She thought it was funny that I would laugh at her and she likes making people laugh. When I told her to show her Daddy her funny cup noises, she put her cup up to her mouth and made her sounds then looked proudly around the room. For a moment she was Jerry Seinfeld and we were the audience laughing at her jokes.
Scarlet has a big white teddy bear on her bed. This teddy bear has recently become a real favorite of hers. I have heard her laughing in her room and walked in to see her holding her teddy bear. This is one of the few times I have seen her play appropriately with a toy! Imagine my delight as she said "Tedydy dydydy Bear" yesterday. It became her word of choice for the day. She was so proud of herself and looked up at me with a huge smile when I celebrated her achievement. Here's hoping it is a word she can find every day.
"Book,book, book", she says every night for a month at bedtime. She loves reading books. It is next in her heart only to bathtime. I am so elated that "book" has become a regular word that she has been using consitantly. She is so cute in her pajamas running around repeating book, book, book.
"Roar! I am a hungry Lion" I say as I lumber around the living room on all fours. Scarlet looks strangely at me as if seeing me do such a thing for the first time. She giggles. Nice, belly giggles that fill a room full of bubbles. When I reach for her to gobble her up she breaks out in peels of laughter. I am seen impersonating lions very frequently these days.
School is going well and Scarlet looks forward to going to school every "B" day. Her teacher is going to have Scarlet teach her classroom sign language, so that her peers can comunicate with her.
Scarlet fell, slippery socks on hard wood floors are like raisins with ground beef...not a great combination. Scarlet cries out right away and burries her head in my chest for comfort. She wants to stay with me and let me make a fuss over her. She acutally milks the moment a task usually undertaken by her sister. This is huge!!!!! This is the girl that often doesn't acknowledge pain. To acknowledge it, cry out for comfort, and to want that comfort to continue....it's huge!
Brynn kisses my face as I read him "The Horse and His Boy", he tells me that he loves me. Skye trips around the house like an elf looking for her Little People and asking to color. I find her coloring Scarlet's legs and pants and shirt as she declares that she can color on people. These little moments are like gumballs laid out on a trail through the forest. They make the journey worth taking.
Saturday, October 3, 2009
grocery store mayhem
The Bible talks of entertaining angels unaware... I may have entertained a few angels in my time...I don't know for sure. It is more likely that I have had some human angels come to my rescue from time to time and last week was no exception. Time and time again, I have been taught just how much God uses his people to be his hands and feet to me. It reminds me that I need to call or send flowers, or just pop in and see the people that I have been thinking about. It may be that I am supposed to be the answer to their prayers that day. I know that the "body" of Christ, his church, has litterally been God's hand to me in various places at various times.
Take Maddison Bugeja for instance, a fourteen year old girl who loves Scarlet, who takes her during church and helps her to integrate into her woods program so that I can have a break during church. Jessica Schaale, Amanda Enz, and Nancy Alves have also said, let me take her for a while...and they do it with happiness... Sometimes they fight over who gets to be with Scarlet. That is a very unheard of situation!!! Most churches can't accomodate people with needs like Scarlet.
Last week I was in the grocery store. I had to have a few items to get supper and breakfast done the next day. I could not leave without the items I needed. It was at this store that Scarlet began tantruming in the frozen foods aisle of the health food section. Let me describe a Scarlet freak-out. It always involves yelling, rather loudly. She throws herself down on the floor and tries to bang her head on anthing in sight, she bites herself and anyone else within biting distance, she hits herself on her head and face with the palm of her hands, she kicks and thrashes. As you can imagine I felt a bit conspicuous as I was trying to keep her from injuring herself and keep from getting injured myself. It is rather humorous now looking back at the situation. I had Skye in the buggy too. She thought that this was something fun that we should do in the grocery store, so she started to scream at the top of her lungs too! I don't think there was a person in that store who didn't know we were there.
Usually I can calm Scarlet after a few minutes, but she was inconsolable. After what seemed like several minutes a brave stranger ventured down our aisle and asked if she could help. What a refreshing person she was. She tried to distract Skye who was managing to wriggle out of her seat belt in the buggy. After a bit she left and Scarlet started again. After a few moments more of insanity, I removed Scarlet's shoes. She was wearing a new pair and it was the only other thing I could think of that might be causing her tantrum. She stopped as soon as I took her shoes off. Obviously she didn't like that pair (I found out later this week it was because they were size 9 when in actuality she wears an 11 1/2...not my finest mommy moment)
Now when an autistic child has had a tantrum of that magnitude, another one can be just under the surface at any moment. I was practically running to the eggs aisle with a Scarlet in her sock feet and a Skye still trying to stand in the buggy. When I we made our way to check out it was one of those dreadful situations in which all the aisle were lined up and I didn't know how to avert the inevitable next tantrum as Scarlet hates standing in line almost as much as she hates those shoes I forced on her feet. I sort of felt like waving at everyone because I felt like people were saying, O that's the noisy family... I wanted to take out my beauty pageant wave, but I had to hold Scarlet's hand while pushing the buggy with a very shift two-year old balanced precariously inside. It was at this moment that I almost heard angels singing... and no, it wasn't a Celine Dion song... it was the face of Donna Rauws coming toward me with purpose in her step.
It seems that Donna had heard us in the store as she was checking out....she must have amazingly keen ears:-) She took her groceries to her car and came back in to find me. She came at just the right time! I almost cried tears of relief, because I was also running late to pick up Brynn at school, but another trip to the store was not possible that day. Donna took Scarlet for a walk up and down the aisles, they looked at the puppy dogs and kittens on the toilet paper, Scarlet was as happy as a lark. She knows Donna from church programs in which Donna has been her teacher and was just happy to be walking with her. At times like these I know that God doesn't have to, but often he does, send people to me just to let me know that he sees me. He may not change my circumstances, but he lets me know that he is standing inside of the fire with me so that I don't get burned....and Donna was that message to me. So once again, like so many other times, I was divinely startled. Thank you, Donna for listening! I guess it is time for me to be calling those people I have been thinking about this week.
Take Maddison Bugeja for instance, a fourteen year old girl who loves Scarlet, who takes her during church and helps her to integrate into her woods program so that I can have a break during church. Jessica Schaale, Amanda Enz, and Nancy Alves have also said, let me take her for a while...and they do it with happiness... Sometimes they fight over who gets to be with Scarlet. That is a very unheard of situation!!! Most churches can't accomodate people with needs like Scarlet.
Last week I was in the grocery store. I had to have a few items to get supper and breakfast done the next day. I could not leave without the items I needed. It was at this store that Scarlet began tantruming in the frozen foods aisle of the health food section. Let me describe a Scarlet freak-out. It always involves yelling, rather loudly. She throws herself down on the floor and tries to bang her head on anthing in sight, she bites herself and anyone else within biting distance, she hits herself on her head and face with the palm of her hands, she kicks and thrashes. As you can imagine I felt a bit conspicuous as I was trying to keep her from injuring herself and keep from getting injured myself. It is rather humorous now looking back at the situation. I had Skye in the buggy too. She thought that this was something fun that we should do in the grocery store, so she started to scream at the top of her lungs too! I don't think there was a person in that store who didn't know we were there.
Usually I can calm Scarlet after a few minutes, but she was inconsolable. After what seemed like several minutes a brave stranger ventured down our aisle and asked if she could help. What a refreshing person she was. She tried to distract Skye who was managing to wriggle out of her seat belt in the buggy. After a bit she left and Scarlet started again. After a few moments more of insanity, I removed Scarlet's shoes. She was wearing a new pair and it was the only other thing I could think of that might be causing her tantrum. She stopped as soon as I took her shoes off. Obviously she didn't like that pair (I found out later this week it was because they were size 9 when in actuality she wears an 11 1/2...not my finest mommy moment)
Now when an autistic child has had a tantrum of that magnitude, another one can be just under the surface at any moment. I was practically running to the eggs aisle with a Scarlet in her sock feet and a Skye still trying to stand in the buggy. When I we made our way to check out it was one of those dreadful situations in which all the aisle were lined up and I didn't know how to avert the inevitable next tantrum as Scarlet hates standing in line almost as much as she hates those shoes I forced on her feet. I sort of felt like waving at everyone because I felt like people were saying, O that's the noisy family... I wanted to take out my beauty pageant wave, but I had to hold Scarlet's hand while pushing the buggy with a very shift two-year old balanced precariously inside. It was at this moment that I almost heard angels singing... and no, it wasn't a Celine Dion song... it was the face of Donna Rauws coming toward me with purpose in her step.
It seems that Donna had heard us in the store as she was checking out....she must have amazingly keen ears:-) She took her groceries to her car and came back in to find me. She came at just the right time! I almost cried tears of relief, because I was also running late to pick up Brynn at school, but another trip to the store was not possible that day. Donna took Scarlet for a walk up and down the aisles, they looked at the puppy dogs and kittens on the toilet paper, Scarlet was as happy as a lark. She knows Donna from church programs in which Donna has been her teacher and was just happy to be walking with her. At times like these I know that God doesn't have to, but often he does, send people to me just to let me know that he sees me. He may not change my circumstances, but he lets me know that he is standing inside of the fire with me so that I don't get burned....and Donna was that message to me. So once again, like so many other times, I was divinely startled. Thank you, Donna for listening! I guess it is time for me to be calling those people I have been thinking about this week.
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