Day 5. Year 2.

Tonight I am not witty or creative. (Not that I usually am)... But usually I have an idea for a post. Tonight I am just tired; And I think I will finally start to listen to my body. So this post will be short.
Goodnight. :) 
Well, just kidding. I can't make it that short!

Vicki had a hard day. And that makes me so sad. Last year, I know I posted a lot about how Vicki's behaviors would cycle. You know, everyone has their good days and bad days. Only Vicki can't tell me why she feels good or why she feels bad, and when her mood changes sometimes it's so dramatic and quick that it catches me off guard. I used to be able to predict with fairly good accuracy how I thought Vicki would react in a situation. I really can't read her anymore at all. Times that I think she will be ok are the times when it all falls apart. And the times that I think will be difficult are a breeze. I feel like Vicki is living the Katy Perry lyrics:

You're hot then you're cold
You're yes then you're no
You're in then you're out
You're up then you're down

And I live for experiencing all of it with Vicki. The crying. The yelling. The laughing. The loving. The joy. The pain.  If I'm overloaded and overwhelmed and stressed and ready to take a break.... I can't imagine what she must feel. I can't imagine because she can't tell me. But she did tell me this morning when she saw Ally put on her long pink sparkly dress for school, 'Vicki purple dress. sparkles.' And she looked so lovely in her purple sparkly dress. Vicki loved looking like Ally. And Ally loved being looked at by Vicki. :) 

To make a long story short, I went back to the doctor tonight because I've been feeling odd the last day or 2 since I finished my antibiotic for my sinus infection. Today my face and cheeks starting swelling and getting painful.  And then, although I'm sure most of it was psychosomatic, I felt like I was having trouble swallowing. So, of course, I think it's some sort of allergic reaction. Well, I am now on 3 meds and I hope I can get this all figured out soon.  (Hence the short, rather uneventful post; I am trying to listen to my body telling me to go to bed...) It was odd though, tonight, how I felt as I said goodnight to each of the kids... It made me think in that very moment how very lucky I am. And I never want to take for granted how amazing life is... even when it throws you curve balls and roadblocks.



Day 4. Year 2.

I listened to my own advice this morning; Or rather, the advice of The Little River Band... 'Take time to make time, make time to be there.' Guess what time it was today? The hardest kind of time to make and justify for me. Yep. A little bit of me time. Rosezella time. That's the kind of time I always feel like I am wasting if I am using. I think it should be called guilt time instead. Why is it that I can spend countless hours getting things ready for my kids, or my husband, or the house, but the minute I spend a minute on myself, I am constantly checking the clock? And constantly feeling guilty about taking this time out for myself. 

Now, I really do believe in the importance of taking care of oneself so that you can better take care of others. But it is so very hard for me to put that into practice. There are seminars on 'Caring for the Caregiver' and countless websites. This quote is from the Family Caregiver Alliance, the National Center on Caregivers Fact Sheet, 'Taking care of YOU: Self Care for Family Caregivers" (www.caregiver.org)

"On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too."

I think that carving time out for oneself is difficult. But much, much needed. My me time today consisted of coloring my hair. Never underestimate what a great haircut or color can do for your mental well being. :) And if you sing the 'I'm gonna' wash that gray right out of my hair' song while rinsing out the color, well... that's just fun. Smiling just to smile. Smiling's my favorite. :) Laughing. Laughing is good too. The really deep belly kind of laugh. The kind that makes you short of breath; the kind that makes you almost have to pee. The kind of laugh... like when you get a baby to laugh. And laugh. And laugh. Baby laughs are the BEST!

The second thing that I did on my me day was have lunch with some wonderful girlfriends. I love great food and great conversations. I especially love great food and great conversations when the only person I have to worry about behaving at the table is me. I don't have to ask for the check as soon as I get my food so that I can make a mad dash for the door when meltdowns commence. I don't have to eat quickly or cut up anyone else's meal. I don't have to worry about whether someone else has to pee, only me. I don't have to make sure mac and cheese is on the menu. I just have to relax. Relax. Relax. Breathe. Talk slower. Don't rush. Don't stress. I actually find myself repeating that in my head sometimes. Because it's not natural to me. It's unnatural to be carefree anymore. I'm a mom. I always worry, I always rush. But it was so nice today to slowwwww down. I enjoyed conversation. I enjoyed a hot sandwich.  I enjoyed talking about nothing, I enjoyed talking about everything. I find it hard to allow myself to enjoy anything just for me. But today, I enjoyed my medium dark brown hair color, a turkey panini with raspberry sauce, and wonderful conversation.

You know what else I enjoyed? I enjoyed an extraordinary day filled with ordinary things. By making the ordinary extraordinary - I cared for myself. And in turn, I cared for my children and my husband. Because I recharged my battery, I was better able to pick up signals and transmit love. When you take a step back from the stress of living, you live. Geeze, I feel like I could make one-liner cliches all night. :)

The other day a friend of mine asked for some advice on things you do to lift your spirits if you are feeling down. It made me start to think, and I put together a list of some of my favorite things to do to recharge my battery. Just making this list should be on my list. Try it, see what you come up with! Here's mine: 

1.   Make some hot cocoa for YOURSELF- not the kiddos, spray it with the spray on whipped cream, take a big gulp, and don't wipe your mouth off. :)

2.   Look at some of your wedding pictures or an old, old, picture of you and your husband together. (Well, not too old! I'm not THAT old yet!)

3.   Play 'Simon' (I have the free app on my phone).

4.   Glitter something. That always makes me happy.

5.   Watch a scene from a favorite movie that makes you smile... for me, I like Forgetting Sarah Marshall... if you've seen it, it's the part when he sings his Dracula song in a bar. If you haven't seen it, watch it. :) 

6.    Listen to fun songs and sing very loudly and off key (I like - My Sharona, Come on Eileen, or Brickhouse.)

7.    If you are lucky enough to have your parents or grandparents on this earth with you, call one of them just to say I love you.

8.    And, finally, say a prayer.

P.S. Remember yesterday when I said I didn't think anyone would remember the time I spent with them last night? Well, the first thing that Joey said to me this morning was, 'I really liked playing Tribond with you mom.' And then, after school, he said it again. 'I really liked playing Tribond with you mom.' And Ally came bounding down the stairs this morning, 'Let's read another Dr. Seuss book tonight mom. I like taking turns rhyming with you.' And Vicki. Sweet Vicki. We made time today to make some Easter Bunny cupcakes. Taking the time to allow Vicki to fill each of the 24 muffin tins, yes it would be much faster and much less messy to do it myself. (And so often I have to stop myself from doing it myself because it's easier... Guilty!) But, watching the excitement and pride in Vicki's face as I put the cupcakes she created in the oven... oh yeah, it's worth it! Children do know. Children do appreciate.

Thank goodness for the gift of each new day. No matter how difficult of a day you've had, the miracle is that, if we are lucky, we get to wake up and try it again. Every morning we get to see a new sunrise. It's our choice whether we squeeze our eyes shut to block out the light, or if we embrace it, take a picture of it, and soak up the warmth of it.

Day 3. Year 2.

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!!! :)

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.

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.

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...

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