I wish I had something amazing and profound to say tonight. But I don't.
All I can think about is time.
Bedtime. Dinnertime. Downtime . Lifetime. Longtime. Meantime. Nighttime. Onetime. Overtime. Pastime. Playtime. Sometimes. Summertime. Teatime. Timeless. Timeline. Timeout. Timer. Did you know that if you google the word time, one site said there are 208 words with time in them? What a waste of time, huh? :)
Because it is way past my bedtime now, I am going to play a little word association game with myself... seeing as I can't seem to type a coherent sentence right now and I don't really want to get into what I am feeling today. The first line I will just type things that come to my mind in general when I think of that word. The second line I will type things that come to my mind when I associate 'autism' with that word. Here we go.
Dinnertime - important, noisy, informal, fun, family.
with autism - prompt to say a full sentence when requesting items on the table, give her smaller portions because she always wants 2 helpings and if you stop her after 1 she may start screaming and have a meltdown, watch so she doesn't put too much food in her mouth at one time, if she gets silly and throws her head back while she's eating remove her food because I don't want her to choke, it's not a game.
Downtime - everyone needs it, how do you find time to get it? recharge your battery. As a mom, who has time for downtime?
with autism - she works so hard, she is always on, she needs some downtime just to recharge, but don't let her just sit and stare blankly at the walls, don't let her stim on that cookbook, she's just flipping pages, it's weird, she's not even looking, don't give her too much time, let her wrap up in her blanket, but she needs to engage, let her just be 'autistic' - what the hell does that mean?
Lifetime - precious, love, people, make a difference, live, friends, marriage, babies, grandparents.
with autism - early intervention, IEPs, ESY, ABA, transitions into young adulthood, adults on the spectrum, living with autism, advocacy, supportive employment opportunities, I need to live forever because what will happen to my daughter if I don't?
Longtime- I've had some of my same friends since I was in first grade, that's such a longtime. I've known/dated/been married to my husband for a long time! It seems like such a longtime ago that I had my kids and my life forever changed.
with autism - I don't have a longtime to hit that 'window of opportunity' for language acquisition... It took such a longtime to get any answers and get an autism diagnosis. She has been learning some of the same things for such a longtime. It takes a longtime for her to master a skill. She's going to be 10 next month. I am scared.
Meantime - ok, I can't think of anything for that right now, so in the meantime, let's move on to the next one. :)
Nighttime- me time, me and my husband time, relaxing time, decompression time.
with autism - scared of what the night could bring. She doesn't sleep much, she's up a lot screaming, squealing, or talking. I need to watch her monitor all night. I don't want to let her out of my sight. Not for a minute. What is that smell when I wake up at 2 in the morning? Cleaning up.
:( Heartbreaking. So so sorry Vicki. Crying. Shaking. Thinking. Praying.
Onetime - this one time at band camp... oh, come on, American Reunion is coming out soon! :)
with autism - just one time, just one time I want her to ask me a question. Just one time I want her to tell me what she's thinking. Just one time I want her to tell me where she's hurting. Just one time I want her to tell me what she's feeling. Onetime is all I need.
Overtime - A mom should totally get overtime wages. :)
with autism - a mom should totally get overtime wages. :) and maybe an extra set of hands and eyes, or a whole village to help out.
Pastime - enjoying a wine tasting, browsing in antique stores, playing air hockey, sitting by the water listening to the waves and feeling the sun on my shoulders.
with autism - I don't ever let my guard down. There is always a fear. There is always Vicki. There is always a sliver of doubt that someone can't take care of her like I can. She's so unpredictable. I can't leave her. I don't want to leave her. What pastimes? What hobbies? There is no diversion. Autism is always there, lingering.
Playtime - fun, laughter, glittery, enjoyable
with autism - work. difficult. why does that doctor have to watch me play with my daughter? please don't analyze me. Over the top. Get her to engage. Reciprocity. My turn. Your turn. Yelling. Don't let her just line things up. Make it fun. Make her want to play with you.
Sometimes - I worry that I am not doing enough, that I didn't spend enough time with Joey, that I didn't spend enough time with Ally, that I didn't spend enough time with Vicki, that I didn't spend enough time with my husband.
with autism - Sometimes I just want to say 'I hate you autism'. Sometimes I get mad. Sometimes I cry. Sometimes I think it's so unfair the hands people are dealt in life.
Summertime - go to the pool, play tennis, ride a bike, go to the playground, enjoy a summer camp.
with autism - ESY, therapy, can't do a 'regular' summer camp. Can't take all 3 kids to do any of the above activities without someone else there to help. Can't just 'be a kid'. Always working.
Teatime - Ally and Vicki, princess tea party, adorable.
with autism - Ally and Vicki, princess tea party, adorable.
Timeless - love and devotion.
with autism -love and devotion.
I think I am really out of time now... I can't seem to keep my eyes open anymore. :) Thank you. Thank you for taking time to read this. I know it didn't say much. But, in an odd way, after doing this little exercise, it was really an eye opener for me. (Is that an oxymoron? Since I can't keep my eyes open? Or maybe that's not what it's called. It's kinda funny though anyway, right?) Today was rough. Autism affects the whole family in so many ways, ways you never plan for, in ways you don't have time for. I never feel like there is enough time. Enough time to 'get it all done' . Enough time to spend 'quality' time with everyone who needs it or even for those who don't actively seek it. Enough time to really be present in the moment. You know what I really wanted to do tonight? Just curl up in my bed with my teddy bear (no, that's not a pet name for my husband, I actually sleep with a teddy bear too... ) and fall asleep after reading 2 pages of a good book. But I didn't. Instead I went to Ally's room and we read some books and talked. Then I went to Vicki's room and she told me slowly and deliberately about her day from her visual schedule. Then I played Tribond with Joey and lost only to make him feel better, wink, wink. Then I watched the New Girl with my husband. Then I came in here to write my blog tonight. Was any of that time wasted tonight? Absolutely not. Will each one of them remember me spending time with them? Probably not. But that's ok.
I love the Little River Band, and this is from one of my favorite songs...
Look around you, look up here
Take time to make time
Make time to be there
And I love you best
You're not like the rest
You're there when I need you
You're there when I need
I'm gonna need you
I know I made time to be there tonight. And I know you're there when I need you. xoxo Goodnight! It's about time!!! :)
Wednesday, April 4, 2012
Tuesday, April 3, 2012
Day 2. Year 2.
It's Autism Awareness Day; and I can assure you I am aware. It's light it up blue night; and I can assure you I am feeling blue tonight. I've felt off all day today. It could be the coffee that I am still drinking that is making me feel shaky. It could be the sinus infection I have that is making me sniffle. It could be the stress I am feeling about getting our taxes done that is making me nervous. Or it could be that I am all too aware of autism today. I close my eyes and I see rainbow colored puzzle pieces. I try to shut my brain down but all I see are memories.
Notes that I've taken.
Videos that I've made.
Resolve that's been unshaken.
Doctor bills I've paid.
Pictures that tell stories.
Of pain, of loss, of love.
Of God and all his glories.
My three blessings from above.
As I said in my post yesterday, I find autism awareness month to be difficult, it brings back a lot of memories for me. Some good. Some bad. Some happy. Some sad. Some filled with hope. Some filled with despair. And today I was thinking about the date of September 11. I am not trying to compare what I am feeling today to what someone who lost a family member or friend on that day so many years ago feels every year on the anniversary of that date. But, seeing those images over and over again.... Feeling the loss and the pain and the anger and the sadness.... Not wanting to watch it over and over, but not being able to take your eyes off of it....Feeling the hope and the strength, feeling the kindness of strangers, the love of a nation.... I can't imagine how overwhelming and powerful that is, when I feel like this today.
Denial/isolation. Anger. Bargaining. Depression. Acceptance.
How do you cope? How do you grieve? Given the diagnosis of autism, not just for your child, but for your whole family. Have I isolated myself? Have I gotten mad? Have I asked myself, could I have done more? Can I do more? What if it's not enough? Am I sad? Absolutely. Absolutely. Absolutely.
Have I accepted autism?
Have I accepted Vicki? Absolutely. Unconditionally. Like only a mommy can. With a force and a love so strong that some days I feel like it's crushing me.
Has Joey accepted Vicki? Absolutely. Unconditionally. Like only a big brother can. 6th grade can be a tough year for a kid. Being a preteen, going into middle school. This is the first year that Joey has been at a school without Vicki. He is Joey. Not Joey, Vicki's brother. He is Joey. And he's meeting new friends. And last night he got his clothes out and ready for school. Not like Joey at all. He never cares what he wears to school, or for that matter if he combed his hair after a shower. But last night he cared. He cared so much he folded his blue t-shirt with the Special Olympics logo on it and put it on his desk. He asked me to remind him to wear it to support his sister.
Has Ally accepted Vicki? Absolutely. Unconditionally. Like only a little sister can. But this little sister is unique. She know how to be a big sister too. Watching Ally reach out for Vicki's hand on the playground. Seeing Ally set up a tea party for Vicki and showing Vicki how to pour the tea. Helping Vicki put her princess dress and crown on. It's bittersweet and touching. They are just sisters playing.
Has my husband accepted Vicki? Absolutely. Unconditionally. Like only a daddy can. The smiles she gives him. The laughs and giggles that he elicits. The comfort he provides. The hope he always holds onto. The future that he knows she can have.
Have we accepted autism?
And here's the thing. You know the one question that really matters in my mind... Has Vicki accepted Vicki? Absolutely. Unconditionally. I see it in her eyes. I see it in her smile. I see it radiate from her everyday.
This post was kind of all over the place tonight... lots of other things happened today that I am reflecting upon, worrying about, trying to figure out. But, hey, I have 28 more days to fill. :)
Let me leave you tonight with one of my favorite parts of the day... bedtime. For obvious reasons as a parent to young children :) but also because I love that time right before bed when the kids are all cozy and comfortable and snuggled. And talkative. :) Tell me one thing that happened today:
From Joey, I usually get, 'I went to school.' Tonight he said that he told his math teacher that PIE and 314 were the same, just look in the mirror. :) He was quite proud of himself.
From Ally, I usually get, 'I was on green today. No. My teacher didn't tell me to take off my scarf and put it in my backpack because I was distracting others. I just took it off because it was too hot and I wanted to run at recess. :) Tonight she was excited because we finished her birthday party invitations (that is still 3 weeks away mind you); I should probably embrace the fact that she is not a procrastinator, but instead I am jealous. :)
And from Vicki.... tonight she was talkative too. :) She usually goes through her day by recalling her visual schedule. I love getting tidbits from her that are not on the calendar. Such as 'first papers. then hershey kisses'. ha ha. Then she will recite the Pledge of Allegiance. So beautiful. So clear. I wish I could get a video of it some night. You know sometimes when you recite something, you have no idea what it was you just recited? With Vicki, I hear every word, every syllable. Then sometimes we will sing a song together at night. Tonight she sang the ABC song. I still get goosebumps every time I hear her sing it. Then I asked her if she would sing a song from on the radio. And she starts,' On the radio. Whoa, oh, oh. On the radio. Whoa, oh, oh. She smiles. I smile. And that's what it's all about. (clap, clap).
There is nothing better for the soul on a difficult day to 1. Have breakfast for dinner. Which we did. Chocolate chip pancakes, strawberries and whipped cream and turkey bacon. and 2. To really listen to your kids because what each one of them has to say is really important. Take the time to listen because they want to tell us so much. And absolutely Autism Speaks. She's the voice of an angel.
Notes that I've taken.
Videos that I've made.
Resolve that's been unshaken.
Doctor bills I've paid.
Pictures that tell stories.
Of pain, of loss, of love.
Of God and all his glories.
My three blessings from above.
As I said in my post yesterday, I find autism awareness month to be difficult, it brings back a lot of memories for me. Some good. Some bad. Some happy. Some sad. Some filled with hope. Some filled with despair. And today I was thinking about the date of September 11. I am not trying to compare what I am feeling today to what someone who lost a family member or friend on that day so many years ago feels every year on the anniversary of that date. But, seeing those images over and over again.... Feeling the loss and the pain and the anger and the sadness.... Not wanting to watch it over and over, but not being able to take your eyes off of it....Feeling the hope and the strength, feeling the kindness of strangers, the love of a nation.... I can't imagine how overwhelming and powerful that is, when I feel like this today.
Denial/isolation. Anger. Bargaining. Depression. Acceptance.
How do you cope? How do you grieve? Given the diagnosis of autism, not just for your child, but for your whole family. Have I isolated myself? Have I gotten mad? Have I asked myself, could I have done more? Can I do more? What if it's not enough? Am I sad? Absolutely. Absolutely. Absolutely.
Have I accepted autism?
Have I accepted Vicki? Absolutely. Unconditionally. Like only a mommy can. With a force and a love so strong that some days I feel like it's crushing me.
Has Joey accepted Vicki? Absolutely. Unconditionally. Like only a big brother can. 6th grade can be a tough year for a kid. Being a preteen, going into middle school. This is the first year that Joey has been at a school without Vicki. He is Joey. Not Joey, Vicki's brother. He is Joey. And he's meeting new friends. And last night he got his clothes out and ready for school. Not like Joey at all. He never cares what he wears to school, or for that matter if he combed his hair after a shower. But last night he cared. He cared so much he folded his blue t-shirt with the Special Olympics logo on it and put it on his desk. He asked me to remind him to wear it to support his sister.
Has Ally accepted Vicki? Absolutely. Unconditionally. Like only a little sister can. But this little sister is unique. She know how to be a big sister too. Watching Ally reach out for Vicki's hand on the playground. Seeing Ally set up a tea party for Vicki and showing Vicki how to pour the tea. Helping Vicki put her princess dress and crown on. It's bittersweet and touching. They are just sisters playing.
Has my husband accepted Vicki? Absolutely. Unconditionally. Like only a daddy can. The smiles she gives him. The laughs and giggles that he elicits. The comfort he provides. The hope he always holds onto. The future that he knows she can have.
Have we accepted autism?
And here's the thing. You know the one question that really matters in my mind... Has Vicki accepted Vicki? Absolutely. Unconditionally. I see it in her eyes. I see it in her smile. I see it radiate from her everyday.
This post was kind of all over the place tonight... lots of other things happened today that I am reflecting upon, worrying about, trying to figure out. But, hey, I have 28 more days to fill. :)
Let me leave you tonight with one of my favorite parts of the day... bedtime. For obvious reasons as a parent to young children :) but also because I love that time right before bed when the kids are all cozy and comfortable and snuggled. And talkative. :) Tell me one thing that happened today:
From Joey, I usually get, 'I went to school.' Tonight he said that he told his math teacher that PIE and 314 were the same, just look in the mirror. :) He was quite proud of himself.
From Ally, I usually get, 'I was on green today. No. My teacher didn't tell me to take off my scarf and put it in my backpack because I was distracting others. I just took it off because it was too hot and I wanted to run at recess. :) Tonight she was excited because we finished her birthday party invitations (that is still 3 weeks away mind you); I should probably embrace the fact that she is not a procrastinator, but instead I am jealous. :)
And from Vicki.... tonight she was talkative too. :) She usually goes through her day by recalling her visual schedule. I love getting tidbits from her that are not on the calendar. Such as 'first papers. then hershey kisses'. ha ha. Then she will recite the Pledge of Allegiance. So beautiful. So clear. I wish I could get a video of it some night. You know sometimes when you recite something, you have no idea what it was you just recited? With Vicki, I hear every word, every syllable. Then sometimes we will sing a song together at night. Tonight she sang the ABC song. I still get goosebumps every time I hear her sing it. Then I asked her if she would sing a song from on the radio. And she starts,' On the radio. Whoa, oh, oh. On the radio. Whoa, oh, oh. She smiles. I smile. And that's what it's all about. (clap, clap).
There is nothing better for the soul on a difficult day to 1. Have breakfast for dinner. Which we did. Chocolate chip pancakes, strawberries and whipped cream and turkey bacon. and 2. To really listen to your kids because what each one of them has to say is really important. Take the time to listen because they want to tell us so much. And absolutely Autism Speaks. She's the voice of an angel.
Sunday, April 1, 2012
Day 1. Year 2.
Well hi! And welcome to 30 days with autism, year number 2. Here we go. :) For those that are just joining me... I created this blog to try to give people a glimpse into my family, my soul. So often I feel that people have questions and want to know and want to help, but don't want to ask, and talking about autism is not something that I just put in a Christmas card update. I didn't want this blog to be preachy or whiny, I just wanted it to be real. And in the process of writing last year, I discovered a lot about myself and my family. And I discovered that blogging probably has helped me out the most. I guess I like to talk and I like to feel and I like to write about how I talk and I feel. :)
First off, a lot of stuff happens in a year. Wow. It's hard to catch your breath sometimes. You know? I have to admit, after writing every day for 30 days, I really missed it when I stopped. I thought I would be updating the blog a lot more than I actually did; I did post 7 entries when I really felt like I needed to 'talk' but that was it. I will also admit that I was nervous about committing to do this again. (Thanks for all of the support, kind words and encouragement!) And now, here I sit, staring at a blank computer screen and thinking, 'Wow. I should have a lot to say....' Maybe I'll just mosey over to pinterest to get some inspiration. :) Just kidding. Well, not really. :)
A friend of mine wrote to me about a month ago and asked if I wanted to write up a little something for a middle school assembly; something about our family, and about what I would like people to know about us and about autism. I was extremely flattered and humbled that anyone would want me to write down my thoughts to share. And I sat down that night at a blank computer screen as well. I sat and sat and sat. What DID I want people to know? What can I possibly share that would make a difference to someone? And this is part of what I wrote:
My name is Rosezella and before my daughter Vicki was born, I had no idea what autism was. Vicki will be 10 years old next month and I still have no idea what autism is. And in 20 years, I will probably still have no idea what autism is. I can, however, tell you what family is to me and what love is to me. My daughter Vicki has autism. Yes she does. But my husband, and myself, and my son and my other daughter also have autism on the brain, not in the brain, but on the brain. Autism affects not just the child, but also the family as a whole. Did you ever make a paper doll chain where you cut out a person on the one piece of folded accordion-style paper and then you open it up and all of the people are joined together by their hands? Isn't it pretty? From one form, you get so much more. And although autism may have shaped Vicki's silhouette, she is, not now, and will never be, alone. She is just like her mom and dad and brother and sister in so many ways. And if something happens and you slip up and make a mistake while you are cutting out the shape... just tape it up! It will all be ok. Love tapes everything back together. I know this is a corny analogy, but it is very real for us every morning when we wake up and every evening when we go to bed. We tape up our mistakes. And we make sure to add lots of glitter to our days and our dolls. We celebrate everyday. We celebrate every Victory. We celebrate our Victoria.
The month of April is always a bit more difficult of a month for me. Because even though Vicki has autism and I live it everyday with her the best that I can, I try not to let autism take over. There are a lot of awareness shows on, discussing, debating, educating. And it's hard for me to watch it and it's hard for me not to watch it. It's hard for me to talk about it, it's hard for me not to talk about it. It consumes me. About a month ago, my son and I were talking about things that happen in life that seem surreal. We were listing some examples, and I said autism. And Joey said something like, 'No. Not for me. Vicki is Vicki. Vicki has autism. Vicki is Vicki. It's not surreal. It's very real. It just is.' Indeed. Well said, baby. There are lots of autism awareness bracelets and magnets and t-shirts and coffee cups for sale. The shirt that says, 'I love someone with autism.' I just want to make up my own shirts that say, 'I love Vicki. I love Joey. I love Ally'. And the shirts that say, 'I have autism, what's your excuse?'... I want to make one that says, 'I live in the moment, how about you?' I learn so much about living everyday through my children. And although I don't understand what autism is, and all I wish for some nights is to unlock that puzzle, I have learned so much from autism. Vicki is an amazing little girl and she is a whiz at puzzles. I know she's got it all figured out inside. I'm just along for the ride to help her get it all on the outside. I hope you'll follow my ride for the next month.
First off, a lot of stuff happens in a year. Wow. It's hard to catch your breath sometimes. You know? I have to admit, after writing every day for 30 days, I really missed it when I stopped. I thought I would be updating the blog a lot more than I actually did; I did post 7 entries when I really felt like I needed to 'talk' but that was it. I will also admit that I was nervous about committing to do this again. (Thanks for all of the support, kind words and encouragement!) And now, here I sit, staring at a blank computer screen and thinking, 'Wow. I should have a lot to say....' Maybe I'll just mosey over to pinterest to get some inspiration. :) Just kidding. Well, not really. :)
A friend of mine wrote to me about a month ago and asked if I wanted to write up a little something for a middle school assembly; something about our family, and about what I would like people to know about us and about autism. I was extremely flattered and humbled that anyone would want me to write down my thoughts to share. And I sat down that night at a blank computer screen as well. I sat and sat and sat. What DID I want people to know? What can I possibly share that would make a difference to someone? And this is part of what I wrote:
My name is Rosezella and before my daughter Vicki was born, I had no idea what autism was. Vicki will be 10 years old next month and I still have no idea what autism is. And in 20 years, I will probably still have no idea what autism is. I can, however, tell you what family is to me and what love is to me. My daughter Vicki has autism. Yes she does. But my husband, and myself, and my son and my other daughter also have autism on the brain, not in the brain, but on the brain. Autism affects not just the child, but also the family as a whole. Did you ever make a paper doll chain where you cut out a person on the one piece of folded accordion-style paper and then you open it up and all of the people are joined together by their hands? Isn't it pretty? From one form, you get so much more. And although autism may have shaped Vicki's silhouette, she is, not now, and will never be, alone. She is just like her mom and dad and brother and sister in so many ways. And if something happens and you slip up and make a mistake while you are cutting out the shape... just tape it up! It will all be ok. Love tapes everything back together. I know this is a corny analogy, but it is very real for us every morning when we wake up and every evening when we go to bed. We tape up our mistakes. And we make sure to add lots of glitter to our days and our dolls. We celebrate everyday. We celebrate every Victory. We celebrate our Victoria.
The month of April is always a bit more difficult of a month for me. Because even though Vicki has autism and I live it everyday with her the best that I can, I try not to let autism take over. There are a lot of awareness shows on, discussing, debating, educating. And it's hard for me to watch it and it's hard for me not to watch it. It's hard for me to talk about it, it's hard for me not to talk about it. It consumes me. About a month ago, my son and I were talking about things that happen in life that seem surreal. We were listing some examples, and I said autism. And Joey said something like, 'No. Not for me. Vicki is Vicki. Vicki has autism. Vicki is Vicki. It's not surreal. It's very real. It just is.' Indeed. Well said, baby. There are lots of autism awareness bracelets and magnets and t-shirts and coffee cups for sale. The shirt that says, 'I love someone with autism.' I just want to make up my own shirts that say, 'I love Vicki. I love Joey. I love Ally'. And the shirts that say, 'I have autism, what's your excuse?'... I want to make one that says, 'I live in the moment, how about you?' I learn so much about living everyday through my children. And although I don't understand what autism is, and all I wish for some nights is to unlock that puzzle, I have learned so much from autism. Vicki is an amazing little girl and she is a whiz at puzzles. I know she's got it all figured out inside. I'm just along for the ride to help her get it all on the outside. I hope you'll follow my ride for the next month.
Wednesday, November 16, 2011
Plus 7.
Welcome to 30 days with autism, the Halloween edition. (OK.. you got me. It's not Halloween anymore... but, what the heck, this is my life. I am somehow late for everything.) People looked at me kinda funny when my kids went to to their doors today asking for candy. :P Just kidding. So many people were anxious to get rid of their leftover candy. :) OK. Just kidding again. No one opened their doors. ;)
In all seriousness, I partly didn't write until now because I didn't want to jinx what I was going to write about. Not sure I'm quite free and clear yet either, but the stitches are out, so I am breathing a little easier. Also, I am so tired of feeling so sad. So I am warning you that I may try to make a few stupid little jokes, but it was no joking matter when it happened. At all. With that being said, are you ready for a frightening Halloween story... full of blood and gore, a white as a ghost mummy, and a scary situation?
Here it goes. My beautiful pumpkin Vicki loves holidays. So much. She loves everything about them: the decorations, the food, the fun, and of course, the Charlie Brown specials. (Just as an aside, she loves 'It's the Great Pumpkin, Charlie Brown' and one night, my husband and I asked her what character she liked from it the best. We named a few characters and when we got to PigPen, she stopped us and said, 'PigPen. Yes' Now, Vicki can remember lines from movies very well, and she does tend to repeat phrases she likes from them quite often, and sometimes I like to see how she associates the phrases to a particular situation. So she said, 'PigPen. Yes'. And then she said, in the most perfect little imitation voice, 'How'd ya know it was me?' The cutest thing ever. :)
So, where was I. Oh, yeah. My pumpkin loves holidays, and she especially loves Halloween (and Christmas and Easter...). My kids get really excited when it is time to carve the pumpkins. But Vicki is the only one of the 3 that really, really likes to help. Joey and Ally theoretically like doing the jack-o-lanterns, but they are very content to draw their faces out on paper as their contribution to the process. But not Vicki. Maybe it's the sensory aspect of the pumpkin goo, but she loves, loves, loves to help. I'll get most of the stuff scraped off the inside of the pumpkin and then she loves putting her hands in there and pulling out all of the stringy, icky pumpkin guts. She is so good at it too, and it is a job that I don't mind giving up. :)
Everything was going so well. And then you have that split second, that split second you wish you could have back. As soon as I saw that she had a knife, I screamed. She wasn't trying to do anything, she just saw my husband carving the pumpkin and a pumpkin piece of the carving had fallen into the sink. She just wanted to help. One thing about Vicki, she's fast. Another thing about Vicki is that she loves helping. And she copies what other people are doing, which in learning and acquisition is a plus. But in this instant it was not. Mummy turned white as a ghost. Vicki grabbed her hand. In general, I don't like blood. Especially my kids blood. It wreaks havoc with me. Another reason I love my husband and think we work so well together. He can handle blood. I cannot. I can handle poop and vomit. He cannot. That bodes well for us.
We decided to take Vicki to urgent care instead of the emergency room. I am so glad we did. The staff was amazing there. It took 4-5 of us to help Vicki while the doctor stitched her hand. I don't want to go into the nitty gritty... but I just want to make a few points. 1. The doctor was amazing. I'm sure it was not the most ideal situations to be put in, but he took the situation in stride and got on his knees in front of Vicki, pulled a light over and went to work. As hard as we all worked to calm Vicki and hold her so he could stitch her hand... I would have been shaking. Well, I was shaking. And sweating. He was so calm. 2. The nursing staff was amazing. They all talked to Vicki and told her what was going to happen, even as she was screaming and thrashing around. They talked her through it. 3. My husband is amazing. He holds Vicki and calms her so well. And she is 5' 1 and 1/2 inches tall and almost 130 pounds now. It's not an easy task. 4. I am thankful for my phone and data plan and You Tube and the 'Barbie Girl' video. We were all singing it, Vicki, Daddy, Mommy, the nurses and the doctors. Come on you know you want to too... 'I'm a Barbie Girl in the Barbie World. Life in plastic, it's fantastic.' Thankfully Vicki doesn't get all the lyrics. :) In fact, as an aside... Vicki sings: 'Come on Barbie, let's go potty... oh, oh, oh...' It's cute. 5. Vicki is amazing. That should have been #1. Now, I'm sure no one enjoys getting stitches. This was Vicki's first experience. 4 stitches in her left hand and another less severe cut that required 6 steri-strips to close. She did not enjoy it. I don't know of anyone who does. But once she started processing what was happening and she got the numbing shot... she settled down a little bit. She even wanted to watch the doctor stitch her up.
We learned a lot of things through this ordeal as well. Vicki is so, so very strong. Both physically and emotionally. I can't say enough about her. It's little things that we had to do... that I didn't have preset on her visual schedule. How can you preset these things. Life happens. Accidents happen. You can't plan for everything although I certainly try. The little things... like unwrapping her bandages for the first time and getting bacitracin on her cut. First time, not so good. Second time, much better. Third time, she just about wanted to do it herself. Vicki liked her hand wrapped, which I am so very thankful for. I could fill up pages and pages of things that have happened in the past that were so very, very hard. Even just leaving a band-aid on her body was immensely difficult. If she would get a mosquito bite, she would pick at it and pick at it. Vicki knows her body, and if there was something- some cut or scratch- that didn't belong, she didn't want it. But this time, I think she took comfort in the bandages. So we made them very pretty and colorful for her. And that third night, she said, 'Boo-boo band-aid' and held her hand out for us. And she didn't get upset when I wrapped her hand in a garbage bag when she would get a bath. I would demonstrate it and hold my arm up in the air. No wet. Keep it dry. Arm up. She was amazing. Oh, and strawberry ice cream has magical powers. :)
After the 10 days were up, we were sweating again thinking about taking her to get her stitches out. My husband took off work and by some miracle, the same doctor was working. And it was just myself and my husband and the doctor for the most part. Oh, and Barbie Girl. And a promise of strawberry ice cream. Vicki did very well, all things considered. And the poor little girl had to endure the doctor picking her stitch that had laid down in her cut out... :( So a little more blood and soreness. :( But nothing that a Charlie Brown band-aid and ice cream couldn't fix. We are still wrapping her hand even though the stitches are out. Until there is nothing there she can pick at, I think it's best. I'm a wee bit nervous that Vicki won't want to not have it bandaged, but I'm sure she'll handle it just fine. There will be a scar. On Vicki's hand. And on mommy's heart... I wish I was quicker or anticipated her move. I wish, I wish... As a parent, I just want to take all of my kids hurt and owies away. I am so very thankful though, that it wasn't worse. When I think about how bad it could have been, I get sick to my stomach.
So as I said before, I was hestitant to write too soon... If you recall, Vicki has had some potty issues at bedtime on and off, for the last few years and especially the last few months. And like I said, it could have ben so much worse. I don't think I slept much while her stitches were in. I watched her monitor at night like a hawk. Even though she was on antibiotics, I couldn't imagine Vicki smearing at night and getting it around her stitches. I don't even want to go there, and am so glad I didn't have to.
So there you have it. My frightening Halloween story. It all ended well. We came home after Vicki got her stitches and finished our jack-o-lanters. Vicki dressed up like Annie for Halloween the next day - red hair and all - and went trick-or-treating. She got lots of treats. And, of course, watched Charlie Brown again.
Just wanted to leave you with a few lines from Annie that I thought were appropriate for this post...
I don't need anything but you!
You've wrapped me around
That cute little finger. (get it... she cut her finger)
You've made life a song .....
You've made me the singer!
And what's the bathtub tune
You always "Bu-Bu-Boo?" (reminds me of her saying boo-boo bandaid)
Bu-Bu-Bu
Anything but you
Yesterday was plain awful (umm, yep..)
You can say that again
Yesterday was plain awful
But that's
Not now
That's then.
xoxo... until next time...
In all seriousness, I partly didn't write until now because I didn't want to jinx what I was going to write about. Not sure I'm quite free and clear yet either, but the stitches are out, so I am breathing a little easier. Also, I am so tired of feeling so sad. So I am warning you that I may try to make a few stupid little jokes, but it was no joking matter when it happened. At all. With that being said, are you ready for a frightening Halloween story... full of blood and gore, a white as a ghost mummy, and a scary situation?
Here it goes. My beautiful pumpkin Vicki loves holidays. So much. She loves everything about them: the decorations, the food, the fun, and of course, the Charlie Brown specials. (Just as an aside, she loves 'It's the Great Pumpkin, Charlie Brown' and one night, my husband and I asked her what character she liked from it the best. We named a few characters and when we got to PigPen, she stopped us and said, 'PigPen. Yes' Now, Vicki can remember lines from movies very well, and she does tend to repeat phrases she likes from them quite often, and sometimes I like to see how she associates the phrases to a particular situation. So she said, 'PigPen. Yes'. And then she said, in the most perfect little imitation voice, 'How'd ya know it was me?' The cutest thing ever. :)
So, where was I. Oh, yeah. My pumpkin loves holidays, and she especially loves Halloween (and Christmas and Easter...). My kids get really excited when it is time to carve the pumpkins. But Vicki is the only one of the 3 that really, really likes to help. Joey and Ally theoretically like doing the jack-o-lanterns, but they are very content to draw their faces out on paper as their contribution to the process. But not Vicki. Maybe it's the sensory aspect of the pumpkin goo, but she loves, loves, loves to help. I'll get most of the stuff scraped off the inside of the pumpkin and then she loves putting her hands in there and pulling out all of the stringy, icky pumpkin guts. She is so good at it too, and it is a job that I don't mind giving up. :)
Everything was going so well. And then you have that split second, that split second you wish you could have back. As soon as I saw that she had a knife, I screamed. She wasn't trying to do anything, she just saw my husband carving the pumpkin and a pumpkin piece of the carving had fallen into the sink. She just wanted to help. One thing about Vicki, she's fast. Another thing about Vicki is that she loves helping. And she copies what other people are doing, which in learning and acquisition is a plus. But in this instant it was not. Mummy turned white as a ghost. Vicki grabbed her hand. In general, I don't like blood. Especially my kids blood. It wreaks havoc with me. Another reason I love my husband and think we work so well together. He can handle blood. I cannot. I can handle poop and vomit. He cannot. That bodes well for us.
We decided to take Vicki to urgent care instead of the emergency room. I am so glad we did. The staff was amazing there. It took 4-5 of us to help Vicki while the doctor stitched her hand. I don't want to go into the nitty gritty... but I just want to make a few points. 1. The doctor was amazing. I'm sure it was not the most ideal situations to be put in, but he took the situation in stride and got on his knees in front of Vicki, pulled a light over and went to work. As hard as we all worked to calm Vicki and hold her so he could stitch her hand... I would have been shaking. Well, I was shaking. And sweating. He was so calm. 2. The nursing staff was amazing. They all talked to Vicki and told her what was going to happen, even as she was screaming and thrashing around. They talked her through it. 3. My husband is amazing. He holds Vicki and calms her so well. And she is 5' 1 and 1/2 inches tall and almost 130 pounds now. It's not an easy task. 4. I am thankful for my phone and data plan and You Tube and the 'Barbie Girl' video. We were all singing it, Vicki, Daddy, Mommy, the nurses and the doctors. Come on you know you want to too... 'I'm a Barbie Girl in the Barbie World. Life in plastic, it's fantastic.' Thankfully Vicki doesn't get all the lyrics. :) In fact, as an aside... Vicki sings: 'Come on Barbie, let's go potty... oh, oh, oh...' It's cute. 5. Vicki is amazing. That should have been #1. Now, I'm sure no one enjoys getting stitches. This was Vicki's first experience. 4 stitches in her left hand and another less severe cut that required 6 steri-strips to close. She did not enjoy it. I don't know of anyone who does. But once she started processing what was happening and she got the numbing shot... she settled down a little bit. She even wanted to watch the doctor stitch her up.
We learned a lot of things through this ordeal as well. Vicki is so, so very strong. Both physically and emotionally. I can't say enough about her. It's little things that we had to do... that I didn't have preset on her visual schedule. How can you preset these things. Life happens. Accidents happen. You can't plan for everything although I certainly try. The little things... like unwrapping her bandages for the first time and getting bacitracin on her cut. First time, not so good. Second time, much better. Third time, she just about wanted to do it herself. Vicki liked her hand wrapped, which I am so very thankful for. I could fill up pages and pages of things that have happened in the past that were so very, very hard. Even just leaving a band-aid on her body was immensely difficult. If she would get a mosquito bite, she would pick at it and pick at it. Vicki knows her body, and if there was something- some cut or scratch- that didn't belong, she didn't want it. But this time, I think she took comfort in the bandages. So we made them very pretty and colorful for her. And that third night, she said, 'Boo-boo band-aid' and held her hand out for us. And she didn't get upset when I wrapped her hand in a garbage bag when she would get a bath. I would demonstrate it and hold my arm up in the air. No wet. Keep it dry. Arm up. She was amazing. Oh, and strawberry ice cream has magical powers. :)
After the 10 days were up, we were sweating again thinking about taking her to get her stitches out. My husband took off work and by some miracle, the same doctor was working. And it was just myself and my husband and the doctor for the most part. Oh, and Barbie Girl. And a promise of strawberry ice cream. Vicki did very well, all things considered. And the poor little girl had to endure the doctor picking her stitch that had laid down in her cut out... :( So a little more blood and soreness. :( But nothing that a Charlie Brown band-aid and ice cream couldn't fix. We are still wrapping her hand even though the stitches are out. Until there is nothing there she can pick at, I think it's best. I'm a wee bit nervous that Vicki won't want to not have it bandaged, but I'm sure she'll handle it just fine. There will be a scar. On Vicki's hand. And on mommy's heart... I wish I was quicker or anticipated her move. I wish, I wish... As a parent, I just want to take all of my kids hurt and owies away. I am so very thankful though, that it wasn't worse. When I think about how bad it could have been, I get sick to my stomach.
So as I said before, I was hestitant to write too soon... If you recall, Vicki has had some potty issues at bedtime on and off, for the last few years and especially the last few months. And like I said, it could have ben so much worse. I don't think I slept much while her stitches were in. I watched her monitor at night like a hawk. Even though she was on antibiotics, I couldn't imagine Vicki smearing at night and getting it around her stitches. I don't even want to go there, and am so glad I didn't have to.
So there you have it. My frightening Halloween story. It all ended well. We came home after Vicki got her stitches and finished our jack-o-lanters. Vicki dressed up like Annie for Halloween the next day - red hair and all - and went trick-or-treating. She got lots of treats. And, of course, watched Charlie Brown again.
Just wanted to leave you with a few lines from Annie that I thought were appropriate for this post...
I don't need anything but you!
You've wrapped me around
That cute little finger. (get it... she cut her finger)
You've made life a song .....
You've made me the singer!
And what's the bathtub tune
You always "Bu-Bu-Boo?" (reminds me of her saying boo-boo bandaid)
Bu-Bu-Bu
Anything but you
Yesterday was plain awful (umm, yep..)
You can say that again
Yesterday was plain awful
But that's
Not now
That's then.
xoxo... until next time...
Thursday, October 20, 2011
Plus 6.
I've started writing so many times in the last few weeks. And then stopped. Emotionally I've been drained. And writing, which usually helps me, seemed like such a daunting task that would open wounds that were just starting to heal. Well, I'm still not quite ready to write about that stuff (and if you haven't seen my recent facebook posts... just to give you a preview of future blog posts and to not be so cryptic ... my dad died 6 weeks ago and we had to put our doggie to sleep last week. So death and grief has been on my mind a lot). But I do need to write. So, here goes... And here's my disclaimer... subject matter in this post is of a sexual development nature.. so if you are uncomfortable talking about or reading about stuff, then you should probably skip this post. And, just in case you all have forgotten how I write - I write like I talk, and I write like I think. Which usually means I am fragmented and all over the place. This post is no exception to that. :) Plus I'm a little rusty.
I'm wondering if anyone has guessed already what this particular post is about. Autism. Yes. Vicki. Yes. Development. Yes. Puberty. Yes. And for those of you who know Vicki quite well... you may want to sit down. Yes. Vicki got her period. How's that for being frank? It's not like I should have been blindsided. And if anyone had been reading my posts in April, I think I posted once about taking Vicki to see an endocrinologist to get some questions answered and to talk about precocious puberty. Oh yes, puberty has been on my mind for the last few years. And if I may be honest, I have been scared shit-less about this day. I knew it would come. I wanted to be ready. I tried to be ready. But. I wasn't ready. Is any mom ever ready for her daughter to grow up? I am choking on the words, ' become a woman.' And, here I go jumping all over the place. Sorry...
You know what makes me mad? Here I am talking about how Vicki getting her period makes me feel. How I am handling it. It's not about me. It's about Vicki. And how Vicki feels. And how Vicki is handling it. Do you remember the first time you got your period? (And... if there are guys reading this... sorry... so for you, do you remember how you felt the first time you had to go to Target to buy sanitary napkins for your girlfriend/wife?) Were you scared? What did you think? Did you understand what was happening to your body? I know I didn't. I don't remember where I was, or exactly how old I was, or what I was wearing... I do, however, remember asking my mom questions. And I remember her comforting me. And, oh, what tears a little hole in my heart is not knowing how Vicki feels or what Vicki is thinking. I just look at her and look into her eyes and want her to know that I would do anything for her. I want to answer any question that Vicki has. But Vicki can't ask the questions. How do I explain everything that she can't ask in a way that will comfort her and know that everything is okay? And that this kind of bleeding is 'normal'. Sometimes I just want to scream. Sometimes I just want to cry. Sometimes I do both, and sometimes I do both at the same time. It's not fair! It sucks! (To lighten the mood a bit... I reread this and wondered if I am talking about Vicki or if I am talking about menstruation in general. ha. )
Wow. I really am sucking at this writing thing tonight. Sorry.... So... I got the call yesterday from Vicki's teacher at school. And I was so concerned. And so blindsided. So scared for Vicki. Wanting to go in and sweep her up in my arms, which, technically is very difficult to do now, because she can almost look me eye to eye. She's at least 5'1" and I am 5'3 and 3/4". I need to put 3/4 in. :) And at the same time I was so very mad at myself. What a failure of a mother I am. I wanted to ask all of the right questions and have everything neatly written out. Stuff done. So Vicki was 'prepared'. So I had questions answered. So I knew exactly what I would need to do for Vicki to help her. I wanted to know what was in store for us. I thought I was doing the right precursors... asked doctors, went to specialists, googled the heck out of autism and puberty for girls. And I came up with not a whole lot. I felt rather silly for asking the questions I asked this past spring when we took Vicki to the doctor. I felt like she thought I was rushing things and asking things that didn't matter now. She said we had at least a year and a half. Well, technically, now, it would be a year. I never did get the results of the testing they did. That's what makes me so mad. I get all gung
So what did happen yesterday? How did Vicki react? What did we do to help her? Well, I did nothing. Her teachers, however, were amazing. They did everything. (PS... I love you!! I can never thank you enough!) And, secretly, well, not so secretly, since I am blogging about this... I am glad it didn't initially happen on my watch. :) I was on the phone with her teacher shaking and trembling. They took care of everything. All I did was pray. And google. And think. And call doctors, behavior analysts, and my mom. While Vicki was at school, I was at Target. Going up and down the feminine product aisles and brainstorming... Which kind should I get? How should I approach this? What kind of reinforcer should I think of?
To make a long story short, well, not so short... after much deliberating and talking with her teachers and other professionals and gaging Vicki's reactions, this is what we came up with... Vicki does amazingly well with visuals. Do you remember the communion visual story I made up for her first communion? Anyway... we thought visuals were the way to go. So we made special potty books for Vicki. On the front are pink hearts and Vicki's name and the potty symbol. On the inside we have strips of Velcro with a sequence for Vicki to follow. This may sound gross, but to Vicki, she needs to be able to understand clean and dirty. So I took a pad and put red food coloring in it to simulate blood. I took a picture of it. So when she sees that picture.. 'red spot - time to change pad', we've associated that the pad is dirty and gave it a color for Vicki. Then the sequence of taking off the pad, wrapping it, throwing it away, wiping, putting a clean pad on, pulling up pants, washing hands, and getting an amazing reinforcer for doing an amazing job. And there you have it. It's not as cut and dry as that. But that's the basics. This is only day 2, remember. I'm sure there will be lots of trial and error and bumps along the way. But, on day 2, today, I think I am finally forgiving myself for not being 'prepared'. Because, who is ever really, really, prepared. I know a few, but come on... Realistically. And, to make myself feel better... until it actually happened, we didn't know how Vicki would react.
Here are a few things we are learning. 1. Vicki is amazing. (well, I already knew that, but, oh my goodness... this just reinforces it.) Not only did Vicki start her period yesterday, but she also lost a tooth. And she is taking it all in stride, unlike the mommy who is, I think, still shaking, as she writes this. :) 2. Vicki likes to be clean... So something that I didn't think of is that she would try to wipe and wipe until the toilet paper was clean. Well, that won't happen and we didn't want her to wipe too much and become uncomfortable. So, we limit the wiping. A picture of toilet paper 1x and a picture of a wet wipe 1x. And then the pad. 3. The hardest part for Vicki, it seems, is pulling up her pants when the new pad is on. Maybe she doesn't like the feeling of it... That's where the behavior is coming in. So we talk to her and tell her what is coming up next and go through the pictures and steps with her. And, thank goodness, there was her favorite- baked potato bar at lunch yesterday. Never underestimate a good 'first / then'. And, thank goodness for chocolate. And for the power of waiting a behavior out. 4. Pairing the chocolate with a new princess stamp set is helping lots. She really likes it. And, today, even put her chocolate down to stamp her name. :) 5. Pink stuff is good. Pink girly stuff makes the other girl stuff less scary. I bought the always pads with wings because they had cute little pink wrappers. And I bought those little baggies that come in a container that you hook on your belt when you walk your dog... because they are bigger than what you normally wrap a pad in. They smell good. And, yep, you guessed it. They are pink. And Vicki thinks they are cool. 6. Did I mention that Vicki is amazing? She hasn't cried. She hasn't 'freaked out'. (like mommy). She's just going with the flow. Oh, yuck. No pun intended. :)
I'm sure I will have a lot more to say in the next few days about this. But for now, I am grateful. Grateful for the support. From my husband. From Vicki's teachers. From Vicki's aides. From my mom. From my friends. And from Vicki.
One final thought. Another thing that has been on my mind. Vicki is only 9. I understand that some girls get their periods earlier than others. I developed early. But not that early. I am still so scared. She's 9. She's almost as tall as me. She's got the body of a woman. But she is my baby. My baby girl. And, yes, she is my baby girl who has autism. And this is my 9 year old baby girl who has autism and now has her period. And that opens a whole new topic for discussion. Another time. I will end tonight with one of Vicki's favorite singers. Britney Spears.
I'm not a girl,
Not yet a woman.
All I need is time,
A moment that is mine,
While I'm in between.
I want so much more time. So many more moments. And I am so, so very blessed to have Vicki.
And I want to say how proud I am of her. She embraces life and everything it throws at her with such grace and beauty and dignity. I am in awe of her. My beautiful 9 year old with autism teaches me more and more everyday. xoxo
I'm wondering if anyone has guessed already what this particular post is about. Autism. Yes. Vicki. Yes. Development. Yes. Puberty. Yes. And for those of you who know Vicki quite well... you may want to sit down. Yes. Vicki got her period. How's that for being frank? It's not like I should have been blindsided. And if anyone had been reading my posts in April, I think I posted once about taking Vicki to see an endocrinologist to get some questions answered and to talk about precocious puberty. Oh yes, puberty has been on my mind for the last few years. And if I may be honest, I have been scared shit-less about this day. I knew it would come. I wanted to be ready. I tried to be ready. But. I wasn't ready. Is any mom ever ready for her daughter to grow up? I am choking on the words, ' become a woman.' And, here I go jumping all over the place. Sorry...
You know what makes me mad? Here I am talking about how Vicki getting her period makes me feel. How I am handling it. It's not about me. It's about Vicki. And how Vicki feels. And how Vicki is handling it. Do you remember the first time you got your period? (And... if there are guys reading this... sorry... so for you, do you remember how you felt the first time you had to go to Target to buy sanitary napkins for your girlfriend/wife?) Were you scared? What did you think? Did you understand what was happening to your body? I know I didn't. I don't remember where I was, or exactly how old I was, or what I was wearing... I do, however, remember asking my mom questions. And I remember her comforting me. And, oh, what tears a little hole in my heart is not knowing how Vicki feels or what Vicki is thinking. I just look at her and look into her eyes and want her to know that I would do anything for her. I want to answer any question that Vicki has. But Vicki can't ask the questions. How do I explain everything that she can't ask in a way that will comfort her and know that everything is okay? And that this kind of bleeding is 'normal'. Sometimes I just want to scream. Sometimes I just want to cry. Sometimes I do both, and sometimes I do both at the same time. It's not fair! It sucks! (To lighten the mood a bit... I reread this and wondered if I am talking about Vicki or if I am talking about menstruation in general. ha. )
Wow. I really am sucking at this writing thing tonight. Sorry.... So... I got the call yesterday from Vicki's teacher at school. And I was so concerned. And so blindsided. So scared for Vicki. Wanting to go in and sweep her up in my arms, which, technically is very difficult to do now, because she can almost look me eye to eye. She's at least 5'1" and I am 5'3 and 3/4". I need to put 3/4 in. :) And at the same time I was so very mad at myself. What a failure of a mother I am. I wanted to ask all of the right questions and have everything neatly written out. Stuff done. So Vicki was 'prepared'. So I had questions answered. So I knew exactly what I would need to do for Vicki to help her. I wanted to know what was in store for us. I thought I was doing the right precursors... asked doctors, went to specialists, googled the heck out of autism and puberty for girls. And I came up with not a whole lot. I felt rather silly for asking the questions I asked this past spring when we took Vicki to the doctor. I felt like she thought I was rushing things and asking things that didn't matter now. She said we had at least a year and a half. Well, technically, now, it would be a year. I never did get the results of the testing they did. That's what makes me so mad. I get all gung
So what did happen yesterday? How did Vicki react? What did we do to help her? Well, I did nothing. Her teachers, however, were amazing. They did everything. (PS... I love you!! I can never thank you enough!) And, secretly, well, not so secretly, since I am blogging about this... I am glad it didn't initially happen on my watch. :) I was on the phone with her teacher shaking and trembling. They took care of everything. All I did was pray. And google. And think. And call doctors, behavior analysts, and my mom. While Vicki was at school, I was at Target. Going up and down the feminine product aisles and brainstorming... Which kind should I get? How should I approach this? What kind of reinforcer should I think of?
To make a long story short, well, not so short... after much deliberating and talking with her teachers and other professionals and gaging Vicki's reactions, this is what we came up with... Vicki does amazingly well with visuals. Do you remember the communion visual story I made up for her first communion? Anyway... we thought visuals were the way to go. So we made special potty books for Vicki. On the front are pink hearts and Vicki's name and the potty symbol. On the inside we have strips of Velcro with a sequence for Vicki to follow. This may sound gross, but to Vicki, she needs to be able to understand clean and dirty. So I took a pad and put red food coloring in it to simulate blood. I took a picture of it. So when she sees that picture.. 'red spot - time to change pad', we've associated that the pad is dirty and gave it a color for Vicki. Then the sequence of taking off the pad, wrapping it, throwing it away, wiping, putting a clean pad on, pulling up pants, washing hands, and getting an amazing reinforcer for doing an amazing job. And there you have it. It's not as cut and dry as that. But that's the basics. This is only day 2, remember. I'm sure there will be lots of trial and error and bumps along the way. But, on day 2, today, I think I am finally forgiving myself for not being 'prepared'. Because, who is ever really, really, prepared. I know a few, but come on... Realistically. And, to make myself feel better... until it actually happened, we didn't know how Vicki would react.
Here are a few things we are learning. 1. Vicki is amazing. (well, I already knew that, but, oh my goodness... this just reinforces it.) Not only did Vicki start her period yesterday, but she also lost a tooth. And she is taking it all in stride, unlike the mommy who is, I think, still shaking, as she writes this. :) 2. Vicki likes to be clean... So something that I didn't think of is that she would try to wipe and wipe until the toilet paper was clean. Well, that won't happen and we didn't want her to wipe too much and become uncomfortable. So, we limit the wiping. A picture of toilet paper 1x and a picture of a wet wipe 1x. And then the pad. 3. The hardest part for Vicki, it seems, is pulling up her pants when the new pad is on. Maybe she doesn't like the feeling of it... That's where the behavior is coming in. So we talk to her and tell her what is coming up next and go through the pictures and steps with her. And, thank goodness, there was her favorite- baked potato bar at lunch yesterday. Never underestimate a good 'first / then'. And, thank goodness for chocolate. And for the power of waiting a behavior out. 4. Pairing the chocolate with a new princess stamp set is helping lots. She really likes it. And, today, even put her chocolate down to stamp her name. :) 5. Pink stuff is good. Pink girly stuff makes the other girl stuff less scary. I bought the always pads with wings because they had cute little pink wrappers. And I bought those little baggies that come in a container that you hook on your belt when you walk your dog... because they are bigger than what you normally wrap a pad in. They smell good. And, yep, you guessed it. They are pink. And Vicki thinks they are cool. 6. Did I mention that Vicki is amazing? She hasn't cried. She hasn't 'freaked out'. (like mommy). She's just going with the flow. Oh, yuck. No pun intended. :)
I'm sure I will have a lot more to say in the next few days about this. But for now, I am grateful. Grateful for the support. From my husband. From Vicki's teachers. From Vicki's aides. From my mom. From my friends. And from Vicki.
One final thought. Another thing that has been on my mind. Vicki is only 9. I understand that some girls get their periods earlier than others. I developed early. But not that early. I am still so scared. She's 9. She's almost as tall as me. She's got the body of a woman. But she is my baby. My baby girl. And, yes, she is my baby girl who has autism. And this is my 9 year old baby girl who has autism and now has her period. And that opens a whole new topic for discussion. Another time. I will end tonight with one of Vicki's favorite singers. Britney Spears.
I'm not a girl,
Not yet a woman.
All I need is time,
A moment that is mine,
While I'm in between.
I want so much more time. So many more moments. And I am so, so very blessed to have Vicki.
And I want to say how proud I am of her. She embraces life and everything it throws at her with such grace and beauty and dignity. I am in awe of her. My beautiful 9 year old with autism teaches me more and more everyday. xoxo
Saturday, July 23, 2011
Plus 5.
Well, hi!!! :) It's been a while. Quite a while. I really meant to update at least a few times a month. And I just looked at the date of my last post. Yikes. It seems like that's me as of late. I am either all or nothing. I am all in, or I don't do it at all. Let me give you some examples: well, for starters, blogging. I can't believe I actually did it everyday in April. I was all in. And then, bam. 7 weeks since my last post. Another example: cleaning. It's either obsessively clean and I want the pillows just so and the cute little lines in the carpet so I vacuum everyday (you know, the lines the sweeper makes as you sweep. ) And then I don't want any footprints in it. I'm sure I've told the story before of how the kids and my husband like to get on my last OCD nerve by dancing around and running back and forth over my newly lined, swept carpet. And to make it worse, one pant leg will be pushed up and cuffed and the other will not. So the kids are all lopsided and making lots of carpet footprints. Arrggghhhhh.... Yes, I'm sure I have a problem. :) Well I either have lots of problems, or no problems at all. Oh, wait, I never finished my thought... I was on it's either clean or...... it's not. And I don't vacuum for a week. I just look at the piles of clothes stacking up in my room and mail and papers stacking up on my desk, and then I can't find something and a pile topples over. So I either walk away or add something else randomly to the pile. What else am I all or nothing with? Oh so many things, exercising, dieting, washing socks. :P The list goes on.
I wonder where Vicki gets some of her tendencies from??? Let me tell you something she is either all or nothing with. The whole bedtime thing. (As a side note... I was actually planning on writing an update tonight. Even though I haven't written in a while, I've had a lot on my mind. And I like writing about it. So, again, with the all or nothing mentality... I'll probably write for a few days in a row.) Anyway, I was going to sit down and finish my story about what happened with Vicki's room. And then it's as if Vicki had this sense that she needed to give me something to write about. I was going to write that things have been going very well at bedtime. I was almost feeling like bedtime was my relaxing time again. My husband and I were starting to whittle our way through DVR'd shows and movies. We're all caught up with True Blood, Glee, Fringe, Bones. And we even watched a few movies. Not all in one night, but over the course of the last 7 weeks. We'd been keeping Vic's monitor on at night to watch her. Maybe all of this summer fun and sun has had her tired. And she recently rediscovered her favorite doggie stuffed animal and she would snuggle with him at night. I was thinking, hmmm... maybe we disrupted whatever routine she had gotten herself into at bedtime by sleeping in the living room for a week while Daddy put her new floor in her bedroom. Maybe that was enough of a time delay, and such a different setting at night that she forgot that she was smearing. Maybe she just really loved her new floor. After we put the new flooring in, I also spray painted her bed frame. It went from a dark wood color to a dusty pink. Very girly. And I put some princess wall stick ups on it. She loved it. And besides looking cute in her room, it now made looking for smelly stuff easier on her bed frame. Who knows why she hadn't smeared since we put her back in her room. I was just thankful that I wasn't going through can after can of resolve carpet cleaner anymore and my laundry detergent use decreased a little bit. And I was getting an hour or two more sleep a night. I get lulled into this false sense of comfort. And tonight both my husband and I were working in the office and hadn't turned the monitor on yet. And Vicki had gone to the bathroom right before bed, so that always makes me feel a bit more secure. But not tonight. My husband just stopped what he was doing and when I asked him what was wrong, he said his nose alarm went off. And, from experience, I've learned not to question his nose alarm. One thing I have to say is that it is definitely much easier to clean up a hardwood floor than it is a carpet. That makes clean up easier, but it doesn't solve the problem. And I still had to strip the bed and do the wash, clean the floor, clean up Vicki, clean under her nails. And use the Lysol. I really, really hope this is not the first night of lots of nights to come again. Back on high alert. And guess what. It's still hard. She was laughing again tonight. The laughter kills me. I usually love Vicki's laugh. But not tonight. Not when it's associated with this. Her laughter, in this specific scenario, makes me so sad. And confused. And angry. And guilty. And a whole lot of other emotions, all crashing down on me like waves in the ocean. Fast and furious. And then it's gone.
I wonder where Vicki gets some of her tendencies from??? Let me tell you something she is either all or nothing with. The whole bedtime thing. (As a side note... I was actually planning on writing an update tonight. Even though I haven't written in a while, I've had a lot on my mind. And I like writing about it. So, again, with the all or nothing mentality... I'll probably write for a few days in a row.) Anyway, I was going to sit down and finish my story about what happened with Vicki's room. And then it's as if Vicki had this sense that she needed to give me something to write about. I was going to write that things have been going very well at bedtime. I was almost feeling like bedtime was my relaxing time again. My husband and I were starting to whittle our way through DVR'd shows and movies. We're all caught up with True Blood, Glee, Fringe, Bones. And we even watched a few movies. Not all in one night, but over the course of the last 7 weeks. We'd been keeping Vic's monitor on at night to watch her. Maybe all of this summer fun and sun has had her tired. And she recently rediscovered her favorite doggie stuffed animal and she would snuggle with him at night. I was thinking, hmmm... maybe we disrupted whatever routine she had gotten herself into at bedtime by sleeping in the living room for a week while Daddy put her new floor in her bedroom. Maybe that was enough of a time delay, and such a different setting at night that she forgot that she was smearing. Maybe she just really loved her new floor. After we put the new flooring in, I also spray painted her bed frame. It went from a dark wood color to a dusty pink. Very girly. And I put some princess wall stick ups on it. She loved it. And besides looking cute in her room, it now made looking for smelly stuff easier on her bed frame. Who knows why she hadn't smeared since we put her back in her room. I was just thankful that I wasn't going through can after can of resolve carpet cleaner anymore and my laundry detergent use decreased a little bit. And I was getting an hour or two more sleep a night. I get lulled into this false sense of comfort. And tonight both my husband and I were working in the office and hadn't turned the monitor on yet. And Vicki had gone to the bathroom right before bed, so that always makes me feel a bit more secure. But not tonight. My husband just stopped what he was doing and when I asked him what was wrong, he said his nose alarm went off. And, from experience, I've learned not to question his nose alarm. One thing I have to say is that it is definitely much easier to clean up a hardwood floor than it is a carpet. That makes clean up easier, but it doesn't solve the problem. And I still had to strip the bed and do the wash, clean the floor, clean up Vicki, clean under her nails. And use the Lysol. I really, really hope this is not the first night of lots of nights to come again. Back on high alert. And guess what. It's still hard. She was laughing again tonight. The laughter kills me. I usually love Vicki's laugh. But not tonight. Not when it's associated with this. Her laughter, in this specific scenario, makes me so sad. And confused. And angry. And guilty. And a whole lot of other emotions, all crashing down on me like waves in the ocean. Fast and furious. And then it's gone.
Wednesday, June 1, 2011
Plus 4.
Thought it might be time for an update... it's been a few days... wow. 2 weeks, I guess. Time flies. Funny. I was actually dusting our bedroom the other day (a shocker in itself), and we have this little hourglass decoration. I dusted it and flipped it over to watch the sand twinkle down to the bottom. About halfway through, it stopped. And I haven't touched it since that day. And it's still stuck. Wouldn't it be cool if time stood still for a few minutes? As hard as some days are, I know that in a few years I will long to have these days back. Sigh...
So, wanna get on the roller coaster ride tonight? The last time I wrote I was ready to rip up Vicki's carpet. Well, we finally did. We took our time and tried to find something that would work for her room. And you know what? It's hard to find what I wanted. So we compromised on some things, and ended up with a snap/lock floating floor in a pretty hardwood color. Clean-up might not be a complete cinch, but it has to be better than my resolve carpet cleaning system! I just couldn't find exactly what I wanted: a bright red vinyl floor, one big piece, with no texture, no seams, and super easy to install and don't forget very affordable, oh, and I want it today.... (I was imagining it to look like those booths in a diner in the 50's. That wasn't what I started out wanting, but I saw the underlayment that my husband put down for the new flooring and it was red. And i liked it. But, geeze, they don't sell it.) Just as an aside, snap/lock flooring systems are not as fun or easy as they sound! They should be called "snap, swear, stomp, swear, pop, snap again, and then beat with mallet flooring system." That is a much more appropriate name. :)
Anyway... you know when you think things are going to go one way, but then with every little step there is a problem, you know, pretty much anytime you do a home improvement project. (wow... let's count how many times I write 'you know' and 'so' and 'anyway'. It could be the blog drinking game.) With tearing up the carpet in Vic's room, we have pretty much rendered our upstairs useless. So, since it was Memorial Day weekend and we had a long weekend of cleaning and working around the house, we decided that we would go 'camping' in our living room since the upstairs was not in the best of shape. I say, always camp in the living room... 1. you are in air conditioning. 2. there are no mosquitoes 3. there are no rocks or dirt (well... maybe dirt!) and 4. no ticks!! It's a win, win. :) Joey pitched his tent and the festivities began Sunday night. And, even though we could probably clean up enough stuff upstairs so at least 1 kid could sleep in their own bed, but, for those of you who have multiple children, you know that 1 kid would NOT be happy. So, it started out with 3 kids in the tent in the living room. 5 minutes after bedtime, Ally was on the big comfy chair, 'they were squishing me!' 10 minutes after that, Vicki was on the couch. (More so because she moves around quite a bit and giggles and talks for a long time, and one thing I never realized, tents are scratchy sounding when you move around.) So, 15 minutes after we went to bed, Joey was in the tent, Ally was on the chair, Vicki was on the couch. And, yep, mommy was on the floor. And now it's Wednesday night. And after a few days of the floor and Motrin, mommy is over this adventure! Kids are still digging it. In fact, I was really surprised at how well Vicki did with the change up in routine. I take her up to her room every night, and show her the progress daddy is making on her new floor. And she has no problem walking back downstairs with me and jumping on the couch. I am actually nervous now to put the kids back into their rooms... I may have some trouble, and not just with Vicki. We'll figure that out when the time comes, hopefully tomorrow!
So. Floor is almost done. Yippi! I am looking forward to sleeping in my own bed again. But honestly, besides the soreness of sleeping on the floor, it has been much easier sleeping next to Vicki and keeping an eye on her than it has been for the last 2 weeks. After the last time I wrote, I had many more resolve cleaning sessions with the carpet and late night showers for Vic. In fact, there was one night that was especially bad... after cleaning in the basement (another pet project of mine of the last few weeks, it seriously looks like we are hoarders down there... oh I have lots to say about the basement, most of which doesn't have to deal with autism, so I guess I shouldn't go there... But I will diverge here for a second and a few thought about the basement and autism. I am certainly not going to blame the disorganization of the basement on autism, although I would like to... but it is very challenging to do things in the basement. When Vic is home and I don't have anybody else with her, it's kind of impossible to even go down into the basement, let alone 'clean it'. I can't be away from Vic that long, not even long enough to throw a load of laundry in, which, I would like to blame my lackluster laundry skills on autism too, if I could :) while I am at it! Anyway (drink if you are playing!) Where was I? Oh, deep thoughts on the basement and autism... I have a lot of boxes in the basement, filled with lots of random stuff. many years of random stuff. And I found a box of some of Vicki's old therapy stuff and things she did in preschool. And it makes me sad. Because so many of the things I saw in that box, Vicki is still struggling with. Years and years of struggling. And there were so many old toys in the basement. Preschool toys that Ally is way past. But I'm not sure if I should get rid of them all yet, because Vicki could still really benefit from them. I will pick back up with this thought another time...I was talking, I think, about an especially hard evening after I had been cleaning the basement...) After cleaning the basement for a few hours, my husband had been watching Vic on the monitor, but in the few minutes that I asked him to come to the basement, yep, she had smeared. After the cleaning routine was done, I took the laundry to the basement and kept working. In that amount of time our dog, Layse, had peed. Cleaned that up. Maybe an hour later, my husband heard someone crying upstairs. Ally. And she was sick again. All over everything. My lpoor ittle girl who was just sick on mother's day, was sick again. Clean. Resolve. Waning. Bath. Snuggle on mommy in chair the rest of the night. That was a hard night.
I will make one final (long) statement about the nighttime potty issues we have been experiencing nonstop. There are many things we need to do. What we have been doing can not last forever. Changing from carpet to flooring may help ease clean-up, but it doesn't solve the behavior. I don't know what I did wrong. Somehow Vicki was reinforced, and continues to be reinforced, I am convinced, by someway I responded to her during clean-up. So many maybes... Maybe it's all sensory. Maybe she really does have to go. Maybe she just wants that shower. Maybe she just wants a response. An emotional response. Any response. Maybe... maybe... maybe... We need a better communication system for Vicki at night. We need to ramp up reinforcement of using the potty all of the time and at night especially. We are trying using a shower as a positive reinforcer for going to the potty at night, not for after for clean-up. I've thought and thought, and talked and talked (ps... if you are reading this.. thank you for talking and listening and just making me feel better!! xoxo). And have no answers yet. And now I am terrified of putting her back in her room. I take her to the bathroom much more frequently throughout the night now. And really watch her for the first 2 hours of bed. We had been watching the monitor and running in for any little thing we noticed. When it was 'bedtime' for the kids that used to be my ahhhhh... time. My coffee time. My me and my husband time. But now it's stressful. And I'm tired. And school lets out in 2.5 weeks. And then it's every minute of the day. Whine. Whine. Whine. Sorry!!! I missed writing. Maybe I should call it whiting. Whiny writing. :P Thanks for listening, again! xoxo
Talking about time... being a mom and a wife, no matter what the day looks like, is how I want to spend my time. Always.
If I could save time in a bottle
The first thing that I'd like to do
Is to save every day 'til eternity passes away
Just to spend them with you
If I could make days last forever
If words could make wishes come true
I'd save every day like a treasure and then
Again, I would spend them with you
So, wanna get on the roller coaster ride tonight? The last time I wrote I was ready to rip up Vicki's carpet. Well, we finally did. We took our time and tried to find something that would work for her room. And you know what? It's hard to find what I wanted. So we compromised on some things, and ended up with a snap/lock floating floor in a pretty hardwood color. Clean-up might not be a complete cinch, but it has to be better than my resolve carpet cleaning system! I just couldn't find exactly what I wanted: a bright red vinyl floor, one big piece, with no texture, no seams, and super easy to install and don't forget very affordable, oh, and I want it today.... (I was imagining it to look like those booths in a diner in the 50's. That wasn't what I started out wanting, but I saw the underlayment that my husband put down for the new flooring and it was red. And i liked it. But, geeze, they don't sell it.) Just as an aside, snap/lock flooring systems are not as fun or easy as they sound! They should be called "snap, swear, stomp, swear, pop, snap again, and then beat with mallet flooring system." That is a much more appropriate name. :)
Anyway... you know when you think things are going to go one way, but then with every little step there is a problem, you know, pretty much anytime you do a home improvement project. (wow... let's count how many times I write 'you know' and 'so' and 'anyway'. It could be the blog drinking game.) With tearing up the carpet in Vic's room, we have pretty much rendered our upstairs useless. So, since it was Memorial Day weekend and we had a long weekend of cleaning and working around the house, we decided that we would go 'camping' in our living room since the upstairs was not in the best of shape. I say, always camp in the living room... 1. you are in air conditioning. 2. there are no mosquitoes 3. there are no rocks or dirt (well... maybe dirt!) and 4. no ticks!! It's a win, win. :) Joey pitched his tent and the festivities began Sunday night. And, even though we could probably clean up enough stuff upstairs so at least 1 kid could sleep in their own bed, but, for those of you who have multiple children, you know that 1 kid would NOT be happy. So, it started out with 3 kids in the tent in the living room. 5 minutes after bedtime, Ally was on the big comfy chair, 'they were squishing me!' 10 minutes after that, Vicki was on the couch. (More so because she moves around quite a bit and giggles and talks for a long time, and one thing I never realized, tents are scratchy sounding when you move around.) So, 15 minutes after we went to bed, Joey was in the tent, Ally was on the chair, Vicki was on the couch. And, yep, mommy was on the floor. And now it's Wednesday night. And after a few days of the floor and Motrin, mommy is over this adventure! Kids are still digging it. In fact, I was really surprised at how well Vicki did with the change up in routine. I take her up to her room every night, and show her the progress daddy is making on her new floor. And she has no problem walking back downstairs with me and jumping on the couch. I am actually nervous now to put the kids back into their rooms... I may have some trouble, and not just with Vicki. We'll figure that out when the time comes, hopefully tomorrow!
So. Floor is almost done. Yippi! I am looking forward to sleeping in my own bed again. But honestly, besides the soreness of sleeping on the floor, it has been much easier sleeping next to Vicki and keeping an eye on her than it has been for the last 2 weeks. After the last time I wrote, I had many more resolve cleaning sessions with the carpet and late night showers for Vic. In fact, there was one night that was especially bad... after cleaning in the basement (another pet project of mine of the last few weeks, it seriously looks like we are hoarders down there... oh I have lots to say about the basement, most of which doesn't have to deal with autism, so I guess I shouldn't go there... But I will diverge here for a second and a few thought about the basement and autism. I am certainly not going to blame the disorganization of the basement on autism, although I would like to... but it is very challenging to do things in the basement. When Vic is home and I don't have anybody else with her, it's kind of impossible to even go down into the basement, let alone 'clean it'. I can't be away from Vic that long, not even long enough to throw a load of laundry in, which, I would like to blame my lackluster laundry skills on autism too, if I could :) while I am at it! Anyway (drink if you are playing!) Where was I? Oh, deep thoughts on the basement and autism... I have a lot of boxes in the basement, filled with lots of random stuff. many years of random stuff. And I found a box of some of Vicki's old therapy stuff and things she did in preschool. And it makes me sad. Because so many of the things I saw in that box, Vicki is still struggling with. Years and years of struggling. And there were so many old toys in the basement. Preschool toys that Ally is way past. But I'm not sure if I should get rid of them all yet, because Vicki could still really benefit from them. I will pick back up with this thought another time...I was talking, I think, about an especially hard evening after I had been cleaning the basement...) After cleaning the basement for a few hours, my husband had been watching Vic on the monitor, but in the few minutes that I asked him to come to the basement, yep, she had smeared. After the cleaning routine was done, I took the laundry to the basement and kept working. In that amount of time our dog, Layse, had peed. Cleaned that up. Maybe an hour later, my husband heard someone crying upstairs. Ally. And she was sick again. All over everything. My lpoor ittle girl who was just sick on mother's day, was sick again. Clean. Resolve. Waning. Bath. Snuggle on mommy in chair the rest of the night. That was a hard night.
I will make one final (long) statement about the nighttime potty issues we have been experiencing nonstop. There are many things we need to do. What we have been doing can not last forever. Changing from carpet to flooring may help ease clean-up, but it doesn't solve the behavior. I don't know what I did wrong. Somehow Vicki was reinforced, and continues to be reinforced, I am convinced, by someway I responded to her during clean-up. So many maybes... Maybe it's all sensory. Maybe she really does have to go. Maybe she just wants that shower. Maybe she just wants a response. An emotional response. Any response. Maybe... maybe... maybe... We need a better communication system for Vicki at night. We need to ramp up reinforcement of using the potty all of the time and at night especially. We are trying using a shower as a positive reinforcer for going to the potty at night, not for after for clean-up. I've thought and thought, and talked and talked (ps... if you are reading this.. thank you for talking and listening and just making me feel better!! xoxo). And have no answers yet. And now I am terrified of putting her back in her room. I take her to the bathroom much more frequently throughout the night now. And really watch her for the first 2 hours of bed. We had been watching the monitor and running in for any little thing we noticed. When it was 'bedtime' for the kids that used to be my ahhhhh... time. My coffee time. My me and my husband time. But now it's stressful. And I'm tired. And school lets out in 2.5 weeks. And then it's every minute of the day. Whine. Whine. Whine. Sorry!!! I missed writing. Maybe I should call it whiting. Whiny writing. :P Thanks for listening, again! xoxo
Talking about time... being a mom and a wife, no matter what the day looks like, is how I want to spend my time. Always.
If I could save time in a bottle
The first thing that I'd like to do
Is to save every day 'til eternity passes away
Just to spend them with you
If I could make days last forever
If words could make wishes come true
I'd save every day like a treasure and then
Again, I would spend them with you
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