Day 29. Year 3.

Today was an emotionally draining day for me.  It started out with Ally coming downstairs crying this morning saying that her throat hurt so bad... to which of course I responded with a trip to urgent care. One negative strep test later (thank goodness!!) and a Chick-Fil-A meal happier, I sent my Ally Belle back to school. Phew. Hmmm... now that I think about it.... was that little girl playing me? She got some good 1:1 mommy time, some snuggles and extra hugs AND Chick-Fil-A... and all it took was a throat swab. Well played Ally. Well played... No, I'm just kidding... I don't normally see my kids crying in the morning...  She needed me and I was there for her. Period.

I called my mom to chat for a few minutes after I dropped Ally off at school... and the minute I heard my mom's voice, I broke down sobbing. I needed her and she was there for me. Period. Sometimes it's so hard to try to be strong. Sometimes it's ok to be weak and sad and frustrated and heartbroken. I feel like we are at a crossroad with Vicki. And I keep asking myself, 'what is best for Vicki?' What does she need? How can I get her what she needs? What path will best lead us? Vicki needs me and I will be there for her. Period.

I am reminded of one of my favorite poems by Robert Frost....

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Lots of other things happened today... some very stressful, others very peaceful... and I am, as always, very thankful. After we put the kids to bed tonight with our I love you, you love me, we're a happy family song, I flopped down across my bed and just let out a big sigh... What a day. The good, the bad and the ugly. I had my phone in my pocket and decided to just get lost for a few minutes in facebook land. I thought I would just do a little friendly stalking, see a few yummy pictures of food, laugh at a few of those rotten egreeting cards (like... never laugh at your wife's choices... you are one of them.), see some cute pictures of my friends' children, long for some of those beautiful sun, sky and sea vacation pictures people post... and just not think for a few minutes. I just wanted to relax and not think about the meetings we had today, or the meetings we have scheduled for tomorrow. I didn't want to think about choices we have to make, fights we have to fight, roads we have to choose.

And in that moment when I started scrolling down my friends posts, I saw it. A post that made me stop in my tracks. A post that made me gasp. A post that made me hug my husband a little tighter, and tip toe back into my kids bedrooms to get a glimpse of their beautiful sleeping faces.

This post... made by a friend of mine who is married to a friend of mine. Friends that I had a lifetime ago... before I had the awesome responsibility of being a mommy. Friends that when I think of them, I think of carefree times, back when we were all young and the world was at our fingertips... we could do anything we wanted to do, be anything we wanted to be. We all met in college. One of the many crossroads in our lives.

Anyway... back to this post. The husband posted on his wife's timeline. "This is _____. ______ died today at 4 pm............. and the post went on. My friend. She was 2 years younger than me. She had beautiful red hair and the kind of smile that just lit up her face and the room she was in. I remember how much spirit she had in her. Anyway... it was just the other night that I saw a picture come up on my news feed that she had posted... a picture of a swollen ankle... for she had broken her hip a few weeks ago and was still laid up, slowly healing from her break. She has 4 young, beautiful children who share that same smile that their mom had. She died suddenly today, and from what I can gather, it was from a pulmonary embolism from complications from her hip fracture. And just like that. A beautiful mother, wife, friend, and human being is gone.

And suddenly, my emotionally draining day seemed very insignificant. I am here tonight. I get to have my husband wrap his arms around me. I get to have my kids roll their eyes at me, whine at me, laugh with me, love with me, and just be with me. What greater gift is there in life?? 

This was not the post I meant to write tonight. But it was the post I needed to write tonight. Contingency plans. Tomorrow morning a husband will be waking up without his wife lying in bed next to him. 4 children will be waking up without their mommy to make them breakfast, to comfort them when their throat hurts, to wipe away their tears and their pains.

I am so lucky. I had the gift of today. And I hope I have the gift of tomorrow... I will be thankful for the gift of life. The gift to attend Vicki's ESY and BIP meetings... The gift to do the mountains of laundry that are piling up. The gift that allows me to tackle my to do lists... and be able to call my mommy and cry to her. The gift that allows me to feel my little ones arms hug me tightly around my neck and whisper I love you mommy... The gift to be standing at a crossroads and be able to choose a path.

 Ally and I read a little from Where the Sidewalks End... today while we were waiting at the doctor's office...
Listen to the MUSTN’TS, child,

Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me—
Anything can happen, child,
ANYTHING can be.
~Shel Silverstein

Anything can be. I believe that. Vicki shows me that day after day. I believe that anything can be.
I believe in Vicki. And I believe in me.

Rest in peace my dear college friend. In your sudden death you have reminded me about life. And about living. And about being.

xoxo

Day 28. Year 3.

I can feel myself starting to wrap up this month already. I'm ready to close the book on April and start a new chapter for May... Lots of things coming up. Meetings galore for Vicki's school. More doctors appointments to go to and more labs to be drawn.. crossing our fingers that IVIG is in Vicki's future. We have Ally's First Communion next weekend with family coming down to celebrate and pray with us. Then it's Vicki's birthday, and the day after that Joey's birthday, laser tag and sleepovers.  Throw in Mother's Day. Add a few more birthdays to go with that... some graduations of some very special people in our lives. A few cups of soccer, scout events, dance, gymnastics, field trips, my husband out of town for a week for work... gotta fit in a pedicure so Vicki will be happy! (didn't have time the other day...) lots of baking- to Vicki's delight. And add some yard work, deck resurfacing, painting in the master bath and ordering our kitchen countertop. That should about do it. I'm sure there will be a few little surprises along the way. It wouldn't be a good book if there weren't twists and turns and bumps in the road. Hmmmm..... Maybe I don't want to close the book on April yet... just doing that little looksy into May kind of just made me tired and freaked me out a little bit.

I'm sure I've told you before that the first of the month is one of our 12 favorite days of the year. :)  There is something about a clean calendar. Vicki loves it too... it's all fresh and open and just stretched out there daring you to jump in and fill it up. As long as I am armed with white-out, I'm good to go. Can't let May get too messy! I'm hoping we get some answers in May. I'm usually pretty good at writing about everything that is happening in our lives when I do this blog for the month. I try really hard to give you a front row seat. But I've kept a lot inside this month...partly by choice and partly because I feel like I have to. At least for right now... I really don't mean to be so vague, but I will say this... If you could say a little prayer this week for Vicki, for mommy and for daddy, and for all those that work with Vicki and love Vicki. Like I said before, autism sucks.  There is so much that goes on below the surface and behind the scenes. I've tried to give you a quick little tour... but it's almost like... I was thinking... those backstage tours at Disney? I've never taken one before.. And I'm not sure I would really want to. I liked experiencing the magic of Disney. I don't want to know what it takes to give me that magic. All of the work and planning and coordinating. I just want it to happen. I don't want to know how it happens. It's probably pretty overwhelming. You know what I mean?

I've gotten so many fantastic notes and emails and texts and calls and letters from so many of you this month. It's truly been an amazing experience for me. For you to allow me into your lives and for you to care so much about ours... what a gift you have given me. And there is something in every single note that pulls on my heartstrings. And makes me think. And makes me appreciate. So thank YOU for making me dig deeper, making me feel more, and allowing me to share with you feelings that I didn't even know I had. I had a conversation with someone extremely close and important to me a few weeks ago and it really made me sit down and question my feelings about autism. And here's what I came up with...

I wonder what would happen if....

my husband and I took Vicki to one of her many doctors and they put her on a new medication, like they sometimes do... We discuss the medication and the side effects and what we hope this medication will accomplish. And I would be lying to you if I told you that I didn't still hold out some sliver of hope for each one of these new meds... Hope that it will be our Vicki that is that story or video that circulates around facebook and gets shared a gazillion times because it makes you feel good. Hope that this new medicine will be the one that turns the key and opens the door in Vicki's mind... and then all of that knowledge and all of that brilliance and all of those words just start pouring out of her. And she's cured of autism. Those kinds of stories, to me at least, are so hard for me to read and watch and think about. I remember when Vicki was 4 or 5 and we were at a very important developmental pediatrician's office who was looked upon very highly in the field of autism. We sat in her office and she was typing away at her computer;  she showed us graphs and numbers and I felt like I was sitting in an infomercial. 'These kids' respond this way to my treatment. One day I gave this kid a shot of .... and two minutes later he was speaking full sentences. It is so hard to fill your heart with that and then think, well... why not my kid? You gave my kid that shot...Why isn't she talking a mile a minute right now? Why didn't she 'recover' from autism? We gave you money. Money out of our pockets. Not money from our insurance. Money from our future. Please, please, please... just let us be one of those stories.

I know Vicki wouldn't be who she is today if she didn't have autism. I know that some of the very things that I love about her are because of autism. And I know that her personality would be completely different if she didn't have autism. And I know that I would be completely different if I didn't know autism.

I'll use the analogy of Vicki's autism with Joey's asthma. Because they are both medical conditions that can wreck havoc on the body and the mind.  Do I wish Joey didn't have asthma so that portions of his life could be easier? Absolutely! So, if someone were to give me a pill that would make autism disappear for good, would I give it to Vicki? Absolutely! Would Vicki be the same? No. BUT... there are so many things that autism has stolen from Vicki, from me, from our whole family... I know that Vicki doesn't even know what could be... or what she is missing, or for that matter what she is beautifully oblivious to. Or does she know?  Is Vicki lucky?

I think Vicki is beautiful and I love and accept EVERY little thing about her. I do. With every fiber of my being. And there are sooo many things that have made an impression on my soul that are directly because of autism. And in a strange way, I am grateful for that. I don't want to change who Vicki is. I embrace every knee slap. Every fruit adoration. Every.... but could I do without worrying for 11 years and probably many more about potty training and cleaning up poop that I would never wish on anyone. And safety issues and behavioral tantrums and worrying about what will happen to Vicki when I die. I could live with out that. I hate autism for that. I hate autism for the sadness that I have seen in her eyes that I will never forget. But on the flip side, I see a gleam in her eyes and the unabashed joy for life that Vicki has that could possibly be a direct result of autism. I embrace autism because I have to . I embrace Vicki because I want to.

So that's about it tonight. I don't know what I just wrote. But I do know that today was a good day. I guess I should write some more 'feel good' posts... Because today I felt good. Vicki felt good. She was happy. I was happy. It was good. Maybe I should post a video to you tube. I wish I had made one of today. So you could watch her fold her hands and pray this morning. So you could see her smile when she did her inspection of the fridge today. So you could see her laugh and laugh and laugh while watching Gnomeo and Juliet. So you could see her make a jelly and baloney and cheese sandwich with the play food and then pretend to eat it. So you could see her put a princess puzzle together today with Ally. So you could have seen her face when she saw Joey home this morning. So you could have seen and heard her when we painted an egg carton flower wreath. It was so beautiful and amazing. So you could see her say, 'mommy feet' and smile at the mere sight of my feet. Ahhhh there are so many things I would have pushed the play button for today. And a few that I would delete as well. I would delete the part when I had to change her sheets again this morning. And the part where she just sat and stared off into space. And the part where she had a poop accident. And the part where super mommy comes to rescue to unclog the toilet again.

So, I guess there are parts of everybody's day that you wish you could (1.) Record and share with the world and  (2.) Press delete and hold the rewind button down for.

Sorry. I am rambling on a lot tonight. Probably because I know I have to do some research tonight after I am done writing, that I just don't want to do or think about. Or it could just be that my brain had lot to be dumped out tonight. Sorry for clogging your time up! Ha ha... Poor excuse for a joke at one the morning. I think I'm hilarious right now, but when I re-read this tomorrow morning... more than likely, not so hilarious. :)  Thanks again, as always, for listening and reading and reading and reading....

xoxo

Day 27. Year 3.

Vicki may not speak a large volume of words, but the words she chooses to speak, speak volumes to me.

Joe. Joe, please. Joe.

Like I've said before, we do so many things together as a family. A family of 5. Daddy. Mommy. Joey. Vicki. and Ally. Our little family. When we don't have organized kids activities on the weekends, we tend to jump in the van, the 5 of us. And just drive. As scheduled as we have to be, our weekends allow us to be a little bit more.... flexible and as 'spur of the moment' as we get. I'll put generic visuals on Vicki's schedule... and as long as 'restaurant' is one of them, she's usually a happy camper. :) Vicki loves going for rides in the car. So do I. Sometimes our weekend afternoons read like this:  Car. Walk. Store. Special Activity. Restaurant. Home. This gives us a little built-in wiggle room. When we have no real plans, those are sometimes the best plans of all. We discover new little mountain roads, the kind that when you crest a little hill, you leave your stomach behind you. The kids giggle and yell, 'no hands daddy.' . I stick my head out the window so I don't get sick. It's so much fun. :)  No, seriously, it is. We'll discover new parks, new hikes, new antique stores, new wineries. (As long as the wineries have oyster crackers and apple juice, we are good to go!) Those are the kinds of days I live for. The moments that we make together as a family. Does it all go perfectly? Nope. Is there whining? Yep. Usually from all 3 at some point. Is it worth it at the end of the day? Absolutely! And since my husband is at the helm... my stress level and fear factor go down exponentially.

Back to my story. Like I said, Joey was not home this weekend. He went camping with the Boy Scouts. I love when these opportunities arise for him. And more and more of his weekends are spent like this. Growing up.  So the 5 of us become 4. (sniff, sniff, sniff... It gives me just a little sampling of what growing up means... and I don't like it, I don't like it one bit. I wish my babies could be my babies forever on one hand... but on the other hand, I am filled with such pride and love for the young man {and young ladies} that my kids are growing into.) And on the other hand... wait... I guess I used both my hands, I can't have any more feelings... :)  Wish it were that easy.

We had an open afternoon. So we did what we love to do. Put on Vicki's schedule: Car. Walk. Store. Special Activity. Restaurant. Home. And we began our afternoon. But this time there were only 4. Daddy. Mommy. Vicki. And Ally. And we all noticed. It's so different when one person is missing. The dynamics change. That person leaves a hole. :(  And Vicki notices. We parked at the mall so we could get the tires rotated at Costco. As we were getting out of the van, it began. Joe. Joe, please. Joe. And Vicki has this almost panicked look on her face. We tell her that Joey is at Boy Scouts and he'll be home 'tomorrow'. Tomorrow. She repeats. And gets out of the van. After the mall and Costco's we head to another store. And it's the same thing. Joe. Joe, please. Joe. We tell her that Joey is at Boy Scouts and he'll be home 'tomorrow'. Tomorrow. She repeats. And gets out of the van. We stop at Chili's for dinner. One of Vicki's favorite restaurants. She had asked for pepper the night before, so we knew that's where she wanted to eat. Just as an aside, we love Chili's. Chili's has a great kids menu and their menu has pictures of each item along with the word. Bravo Chili's. Bravo. And Vicki loves their corn on the cobb on a stick. She thinks it's the most fantastic thing ever. :)  We pull into Chili's parking lot. And yep, you guessed it. Joe. Joe, please. Joe. We tell her that Joey is at Boy Scouts and he'll be home 'tomorrow'. Tomorrow. She repeats. And gets out of the van. When we get home and it's time for bed, yep, you guessed it again. Our little bedtime routine usually consists of the 5 of us gathering in Vicki's room. We do a corny little group hug and sing, I love you. You love me. We're a happy family. With a great big hug and a kiss from me to you. Won't you say you love me too. I love you. I love you. I love you.  Before we start the song, Vicki looks around. Joe. Joe, please. Joe. We tell her that Joey is at Boy Scouts and he'll be home 'tomorrow'. Tomorrow. She repeats. And we sing our song.

I really don't want to break down and cry right now. So, I am not going to be as detailed as my mind currently is.... There are weekends like these, where Joey is not home. It's so good for Joey, I know this. It really is. It can't be the 5 of us forever, wish as I may sometimes. A few months ago there was a Saturday evening where Joey was on a camping trip and Ally was at a birthday party or something. And suddenly the 5 of us became 3. Daddy. Mommy. And Vicki. I actually have a lump in my throat just typing those words. Daddy. Mommy. And Vicki. I know that Joey and Ally will grow up. I know that they are creating lives of their own. I know that I need to let them. I'm pretty sure this is one of the hardest parts of parenting... and it gives me a glimpse into the suddenly not so distant future. And I am scared. And I am proud. And I am sad. And I am happy.

And I think of Vicki. And my heart feels like it is being wrung out. Daddy. Mommy. And Vicki. What will happen??? She loves her brother and sister so so so much. She needs them so much. What does Vicki feel when she is sitting on the couch, looking around for them? What will it be like someday? When they are not there?  I know Joey and Ally have to grow up. They have that right. And Vicki will grow up. Daddy. Mommy. And Vicki. There will always be Daddy. Mommy. And Vicki. Someday there will be 3 with occasional visits from the other 2. What will happen when I can't say they will be home tomorrow??

I have so much more to say on this subject, but my heart just won't open up to allow me to write anymore. For right now, I am just thankful that tomorrow is today.

xoxo

Day 26. Year 3.

Mornin'.... I did it again... that sleep thing. :)  Again... my apologies for a late post (especially to those who, during the month of April, make reading my blog part of their daily routine... you know how much I thrive on routines... and I hate messing one up!)  I have to warn you... I feel like this post will be all over the place, I will try to reel my thoughts in, but already I've used way too many of these .... ..... ha ha!

I kinda feel like talking about mom guilt this morning, all the while mixing in a little bit of grief as well. Everybody, at some part of their life, has probably experienced a healthy dose of both. I know I have. And it hits me at the oddest times. It can come in gentle waves lapping at the shoreline and it can come in massive typhoons.

Let me give you an example. I was outside quite a bit yesterday doing some yard work and when I woke up a little bit ago the first thing I did was walk over to the kleenex box in the kitchen (ok, that was technically the 3rd thing I did... after peeing and making a cup of coffee). Anyway, as I was getting a kleenex out I glances over at the kids' soccer team pictures that they just got back last week. You know those little cardboard collages... one with the team picture on it and one with an individual picture... always with the kids smiling painfully and squinting because they have to look into the sun. I glance quickly at Joey's and Ally's pictures and then it hits me... the typhoon of mom guilt and grief all at once... I hate, hate, hate that there are only 2 sets of soccer pictures up. I have 3 kids. And only 2 sets of pictures. Well, at least I am already by the kleenex box and my eyes are already puffy from allergies... this little cry won't cause too much more damage.

I feel so guilty sometimes.... guilty because Vicki hasn't gotten to experience the fun of squinting into the sun to smile with her soccer team. I try, like every parent does, to treat my kids equally... you know... count the number of presents that each one has under the tree at Christmas... treat them all equally special on their birthdays... spend equal amounts of money on them for activities and for gifts. Spend equal amounts of 'quality' time with them.... Ha. You know yourself, that's just about impossible to do... I mean even just from the basic standpoint of ... Joey likes video games... Ally likes crafty things.. Which is more expensive? A new xbox game or a set of twist up crayons and a new journal. I don't want them to think I love one more than the others... It's such a fine line to walk. And there is always some guilt associated with decisions we make.

And with Vicki... there is so much guilt. I know she can't participate on a traditional recreational soccer team. I know she can't. But, man, is the guilt there this morning as I look at those 2 sets of pictures. I never want to say, 'I know she can't do it'... Because what does that say about me? I don't believe enough in my daughter? I don't have enough confidence in her? Because when I stop believing... and I stop trying... .then who will??  How do I know? How do I really know? Vicki can't tell me the activities she wants to participate in. Well... that's not true, technically. I know for a fact she loves her adaptive dance class. I know for a fact she loves cooking. I know this because there are moments, moments where I see that big, beautiful smile of Vicki's. I know that because I see that twinkle in her eyes. I know that because I see the knee slap squeal she does. I know that because she is with me.

We've had Vicki involved in special olympics in the past... So far we've tried special olympics swimming, track and field, and cheerleading. They have a soccer program, but we've never tried it yet. But over the past year or so, we've pulled back from some of those activities... Why? There are so many reasons... And I feel guilty for so many of those reasons too.... I know there was a time when she just couldn't participate. Because we couldn't even get her out of the shower in the mornings. That's improved now. So what's keeping me from doing some of these activities? I'm going to say fear, that damn fear again. It is like a big elephant in the room. That's definitely a motivator, or non-motivator for me. And also... I can just tell sometimes... Vicki gives me some clues... some body language clues that tells me she doesn't want to do something. She holds her ears. She withdraws. She scrunches up her shoulders and caves in on herself. She yells. She squeals. (And not in the good, happy squeal way). She fights us. She doesn't want to get up and participate. She sits down and won't move. It's hard. It's hard because sometimes I want her to so bad, because I've seen that moment on her face... that moment of pride in herself. That moment a few years ago when she ran her first 50 meter dash... my husband on one end and our aide on the other end of the race waiting with open arms for Vicki. Me and Joey and Ally in the stands cheering her on. Gosh, that was a hell of a moment. I remember it now. I have tears in my eyes now. That's why we try things. For that moment.

So, why not now? If I'm being completely honest, sometimes it's just easier. It's just easier not to try. After everything our family has been through in the past year, it's just easier not to try it. Because Vicki doesn't know, right? She doesn't know what she is missing... Does she? She never asks to do something. Of course, she doesn't. So I shouldn't feel guilty, right? But I do. But then, on the flip side, I would feel guilt over Joey and Ally as well. They deserve something normal. And easy. And logistically... you know as a parent, it's never easy. 2 different soccer teams, 2 sets of practices during the week, 2 sets of games on a Saturday morning... 2 different places, usually one game on one side of the county, the other on the other side... So my husband goes one way with one kid and I go the other way with the other kid. Where does that leave Vicki? Home with an aide? Working? Logistically, right now... it is impossible for us to go to 3 separate things at the same time. We need my husband there with Vicki and her aide.. She would not be able to get through a soccer practice without at least my husband and her aide... and having 3 people there would be even better. And right now... it would be torture for Vicki and for all of us to sit through a soccer practice... We will sometimes kick the soccer ball around with Vicki. She'll maybe kick it twice before she's done. And after that minute, she is done. And she will not do any more... And what would happen to Joey and Ally if we all had to go to a soccer practice that Vicki probably wouldn't participate in for more than a minute? Would they have to miss their soccer games? Would they not have anyone to cheer them on from the sidelines?  I would feel guilty about that too...

I've always prided myself that we do things as a family. The 5 of us. And sometimes the 6 of us, depending if we have an aide along or not. And we try to find a balance. Some early morning soccer games we do let Vicki stay home with her aide and work. Because she is happy. And content. And other Saturday mornings we will all go to the kids soccer games, spread out a blanket and bring a princess coloring book for Vicki. And I'll prompt Vicki to yell, Go Ally! Go Joey! And she does.

Guilt and grief. They go hand in hand. Some days I can't feel one without the other. Guilt over not trying. Grief over not succeeding.

Well, today is an amazingly beautiful Saturday morning. I will tuck both guilt and grief into my pocket for the day and just try to enjoy it. And it's funny with all of the soccer talk today.. we don't have any soccer games to go to today. Joey is on a camping trip with the boy scouts, he left last night and won't be home until tomorrow... And Ally has first communion practice today, she had a soccer game during the week and doesn't have one today. No soccer today. Our afternoon is wide open after first communion practice... what will we do? What will we do? Something that hopefully won't make me feel guilty or grief-stricken... and something that will make that twinkle appear in Vicki's eyes. Yes, I live for that twinkle. And I will do everything in my mom power to put it there.

xoxo

Day 25. Year 3.

Some days you just want a break, you know?? Just a little time out. To hit the pause button... the mute button... the power off button... Just for a minute. Everybody wants to whisper those 4 words at some point... Calgone Take Me Away...

I would love a little break from autism. Not from Vicki. From autism. Oh who am I kidding?! Just because Vicki has autism doesn't mean I can't think of her like I think of Joey and Ally. Do I want a break from Joey sometimes? Sure. Do I want a break from Ally sometimes? Sure. So, do I want a break from Vicki sometimes? Yes. I guess I do.
Does that make me a bad mother? I don't think so. I think, or I hope, it just makes me normal and human.

But here's the kicker... with autism. There is no real break. Even when the kids are at school... autism is still with me. Hovering over me, smothering me at times... The 6-ish hours that the kids are in school... I think about autism way too much. And autism plans my day way too often. I drop the kids off at school and I go home. Autism greets me. Diapers and garbage to throw out. Sheets to wash. New visuals to laminate. Doctors to call. Appointments to schedule. Medicines to order and pick up. Updates to write. Insurance to wrestle with. Research to do. Phone calls to make. Aide schedules to prepare to make sure every waking hour is accounted for and covered. Behaviors to muse over.
And this month... as much as I love writing, and as much as this blog is for me... it also becomes overwhelming. Because it makes me think of autism even more than I normally do. It makes me wrestle with feelings at 2 o'clock in the morning instead of sleeping.  Ahhh....That was a pretty good pity party. Thanks! ;)

OK... back to my break. It wasn't calgone that took me away today. It was Ally. And it was much needed. I had already done my 'homework' and the day was as 'planned' as a day can be 'planned'. I had an aide scheduled to work with Vicki. I had my husband getting home and taking Joey to soccer practice, as long as traffic didn't get in the way with my plan... And as an added bonus... I asked my husband to take Vicki and her aide with him and Joey to practice at the park. The day was just too pretty to not enjoy it. I wanted Vicki to enjoy it.  And with my husband there, I could breathe a little easier... I wasn't worried about Vicki dropping while walking around the track. I wasn't worried about Vicki playing on the playground. (Well... ok... even with my husband and Vicki's aide... so a 2:1 ratio for Vicki... I still worried. Just a tad bit.) In case you can't tell this about me, I like to worry. It's what I do. And I do it very well. :)  I've always wondered what I was good at... I can't sing. I can't draw. and so on... But, boy can I worry. :)  I am an expert worrywart. I'll take it.

Anyway... Ally took me away. Ally gave me my break today. We went to her gymnastics class... like we usually do on Thursdays... And instead of rushing right home after class (and a stop a Chick-Fil-A!) since no one was going to be home, we decided to just meander. I don't get much of a chance to meander. Or to be spontaneous. I am always planned. Always a little ball of stress. Always plotting my every move and Vicki's every move and how Vicki could/will react to a blip in the day... So today after gymnastics... Ally and I just hung out. We didn't do much... but it felt like we did everything. In reality we took an hour and went to Goodwill and to the Dollar Store. They were close by the gymnastics center and we both love a good bargain and a good find. And we found both today. And along with that, I found a little piece of myself today... and I am grateful to Ally for that.

We looked through toys. We looked through knick-knacks. We looked through clothes and purses. We looked through books and videos. And my goodness did we have fun. Discovering. Enjoying. Laughing. Smiling. Being. I let Ally try on some heels that were way too big for her. She strutted up and down the aisle with those too big pink heels on, with a scarf around her neck, and a lace/pearl choker necklace on. She was wearing her leotard and shorts from gymnastics. And she was rockin her Princess Leia hair buns today.  She tried on knee high black boots. She tried on wedge sandals. She tried on dresses. We found some decorations and fabric for her Barbie house. That hour was so needed for me. And her.

I just needed some mother/daughter chill time. I needed to not have it be planned or scripted. I needed to not feel anxious. I needed to not be afraid. I just needed to let my guard down a little. And here's where I feel terrible. I needed Ally. I don't feel terrible that I needed Ally. But I feel terrible because Vicki couldn't give me that. And that is so hard for me to accept sometimes. Vicki gives me so much. But she couldn't have given me that hour that Ally did. It wouldn't have felt the same.

I know that you can't feel the same things and do the same things with each of your kids. I don't think Joey would have been able to give me what Ally gave me that hour today either. ;)  But you know what I mean?? It's just so hard to love something so much, and need something so much and be grateful for something so much. And experience that blissful hour with my daughter. And it's so normal. And so... I don't know... it's so easy. And free. And easy. And at the same time... I experience heartache and grief and sadness because no matter how many pictures I could (and have) put on Vicki's visual schedule or how many social stories I could have had. Or how much I could have talked to her about it before hand... it just wouldn't be able to happen like that. (I know because I've tried. Many times. We can have moments. And I live for those moments. I really do.) It's just different. How can I be so grateful and so grief-stricken at the same time?

Since I started this post tonight, I haven't been able to get a song out of my head. So, I'll share it with you. Do you remember that sitcom in the 80's...with Nell Carter? Gimme a Break? 
If not, let me refresh your memory....And you're welcome :)

Won't let em get the best of me
Wo wo wo wo...
Gimme a break the game is survival
Gimme a break and plan my arrival
Gimme a break for heaven's sake
I've got to get a piece of the cake...
Hey Gimme a break. Gimme a break.

Thanks, as always for listening... And you know what? Just singing the words to that song make me think of Vicki... No, not the gimme a break part now. I had my break. Now... I want to spend a blissful hour with my daughter Vicki. I think we'll put 'baking' on her schedule tomorrow... maybe it's time for a cake. No.. we just had cake for Ally's birthday... maybe a cheesecake. Yes. A cheesecake. I will spend a blissful hour with Vicki where she is the most happy and the most free.... in the kitchen. Discovering. Enjoying. Laughing. Smiling. Being. Yes. That's what we'll do.
xoxo

Day 24. Year 3.

You know the sound a child makes when they are coming down the stairs? The pitter-patter of their feet hitting the stairs? Thump, thump.    Thump, thump, thump.    Thump. Thump. Some mornings I love hearing that. Other mornings not so much... I think it totally depends on the time of the morning that I hear that pitter-patter and, of course, my mood. Some mornings the pitter-patter is slow and deliberate, like when they have to go to school... other times it's quick and playful, like on Christmas morning or their birthday... But, no matter what the occasion is, no matter what my mood is no matter what time it is... that sound is comforting to me. It's familiar. It's a new day, full of possibilities with my little loves...  But yesterday morning (and my pronoun implies, that I did indeed go to sleep early again last night... sorry for the late blog post again!) the sound coming down the stairs frightened me. It didn't sound like the normal pitter-patter of my kiddos little feet. It was more like thump. thump. Thud,   th th th thud,   thud. Crash. And I went running. My heart was racing and I was freaking out. Ally. Ally. Are you ok? As I was running to the stairs I was holding my breath for the crying to begin. And I was holding my breath for no crying. My hands were shaking. It sounded so bad. I got to the stairs and I see Ally slowly walking down the stairs, sleepily holding onto the banister with her mickey mouse blanket draped around her. Just like every other school morning. I swept her up in my arms and hugged her and hugged her. My hands were still shaking. Are you ok Ally? Yeah, why, what's wrong Mommy? Nothing, I said. It was the oddest thing. Both myself and Joey heard the thudding on the stairs and he came running too. And she was fine. Thank goodness. I still can not figure out what happened... was there something on the stairs (sometimes we'll put things on the stairs to take up or down the stairs) that fell down and made that horrible thumping sound? Was she sleeping walking down the stairs and missed a few steps and just got up and kept going? I have no idea. It was the strangest thing. I am thankful that I didn't find her in a little heap at the bottom of the stairs... we've had our share of missing a step or two and taking a few little tumbles... and the older we all get, the harder the fall gets...

This 5 second non-event shaped my day yesterday. And made me think about what could have happened... And that made me start thinking about things I think of every once in a while then push to the back of my mind. Things that I should think about and plan for but am afraid to do so... contingency plans. We all should have them and make them.... what would we do if? What would happen if? Prepare for the unexpected. And so often I don't want to think about the unexpected because it frightens me. And there is that feeling of indestructibility. Nothing will ever happen. That wouldn't happen to me... we're all good.

But freak accidents do happen. Bumps in the road do occur. Things don't always go as planned. You would think that as much as I have to plan the day for Vicki... I would be quite the good planner. I'm not, though... Things happen and sometimes they blindside me. From the smallest of things (I am out of the spray we use for Vicki after her shower, now what?? Can we get through the day? Will she be able to finish getting dressed?) to larger things (what would I have done if Ally had fallen down the stairs?? If I had to take her to the doctor immediately? What would I have done? Vicki was still asleep in bed, she would have been expecting me to come in with her schedule and start the day like she normally does... get a shower, go to school... etc... She would not be expecting me to yank her out of bed and throw her in the car and go to the hospital... And it's these things... what would my plan be? Who could I call that could just drop everything and come over? Our family is 5 hours away. The aides that I have for Vicki live 25 minutes away. And what could anyone have done if they did come over? Vicki hasn't been able to get ready for anyone else but me in the mornings for months and months now. Her diaper would probably be soaked... Would anyone actually be able to help? Would I have been able to get Vicki in the van myself carrying a hurt Ally?) It's the unexpected bumps that I feel like I am totally unprepared for.

I start thinking about bumps in the road... and my mind wanders to more complex scenarios... Places that you don't want your mind to wander to... What would happen if I was in a car accident with the kids? I have in my ICE contact on my phone some notes about Vicki. I also have other things printed out in the van... I know these are somewhat morbid thoughts... things that just couldn't happen... right? But what would happen if rescue workers came upon Vicki and I couldn't tell them anything?

I know I've said before that Vicki has Project Lifesaver... a band around her ankle that she wears 24/7 that emits a specific frequency if she would ever wander or get lost... She's worn it on her ankle since she was 4 years old... right after the incident that I will never, ever, forget in my entire life... that has shaped so much of who I am right now... the day that Vicki did wander away and the police had to look for her. I still shake to this day with the emotions, so raw still after all these years. That kind of fear just grips hold of you, and I have never been able to shake it off completely. I check Vicki's ankle bracelet every morning with the battery tester. And last Friday the red light didn't blink like it was supposed to. That little red light that gives me a bit of peace of mind... didn't blink. I was a nervous wreck all day... even though Vicki was in front of my eyes all day (since we were at the doctor's that day anyway)... I was still nervous. I called the police department like I was instructed to and they came out when we got home and changed her battery. Here, it seems that the device rusted out from the inside and ruined the whole transmitter... We had to get a whole new device... they think the battery might have leaked or the waterproof ring didn't work... We've had little troubles here and there with this device... where the battery stops working before the 30 days... or the signal isn't very strong. And it worries me... What if? What if? What if something happens and this peace of mind back-up that I have fails when I need it the most?

And then, of course, my mind wanders to the ultimate bump in the road... what if something happened to myself or my husband? I never want to think of that... but it's irresponsible for me not to plan something... What would happen if something happened? What would happen to Vicki? (and to Joey and to Ally?)  I don't think I am the only one in the world equipped to take care of Vicki. But then again, yes, I do. I can not die. We all die someday. But, me, I need to be indestructible for Vicki. That's not the best contingency plan. I know that. And me thinking that Ally had fallen down the stairs when she actually didn't forced me to think about contingency plans. What is Vicki's Autism Action Plan? With as much planning as I do, I can't answer that question. And that worries me.

Well... I need to go and listen for that pitter patter on the stairs... And pray that all goes well today... and hope that Vicki has a better day at school... I just need to get through this day.

Sorry about the heavy subject matter today... it's just been on my mind. I can't leave you with that... let me leave you with this... We watched Ice Age 4 the other day... and there's a song in it... We are. We are. Fam-i-ly. We are. We are. Fam-i-ly. Vicki was singing it. She really loves that song... And at the end of the song, I think it's the crazy aunt or grandma that sings... We are. We are. Ham-and-Cheese. And Vicki doubles over with giggles when she says that. Vicki was singing it at bedtime and when she sang the ham and cheese part, that slow little Vicki smile started spreading across her face and she thought she was hilarious. So did I . :) 

xoxo

Day 23. Year 3.

I've been so tired lately...
How tired are you?
So tired.... that when I went to write in Vicki's potty book a half an hour after I got her ready for school,  I couldn't remember if she had peed or not.. Half an hour... and I honestly couldn't remember. Wow. So I threw in the towel early last night, I didn't want to have another day stressing over if Vicki had peed or not. I kept thinking she was going to have an accident all day long. And just an FYI... in case you didn't know... when a 10 year old child doesn't pee for a long time and then has an accident, it usually requires a new pair of tennis shoes.

Vicki has a potty book. She's had a potty book for as long as I can remember. It sits on our kitchen counter everyday. It goes to school in Vicki's backpack. I started her potty book way back when we started potty training her... and that's been going on for years. Because Vicki doesn't tell us when and if she goes to the bathroom, the potty book was a way to remember and communicate with everyone who works with Vicki on a daily basis. That way we can be more alert for the potty dance if we know she hasn't gone... It's also a great way to look at trends. I can't tell you how often I've looked back in these books to see when things started happening... It's great to be able to access that history for doctors...

 Potty training for any parent is a difficult process... that sometimes seem to take forever. With Vicki, it's one of the many things that ebbs and flows... that's kind of funny... flows... Anyway... I often wonder when I will be able to say that Vicki is officially potty trained. Eh. It's just a phrase. I look at that phrase and remember the countless hours that I've (and so many other people) have spent with Vicki in the bathroom, setting timers to go to the bathroom, washing clothes and cleaning up after the bathroom... And Vicki really has come so far. If you think about it... teaching a child that when you get 'that feeling' that you need to go to the bathroom. It's not an easy thing to master.

I hadn't meant for this post to become an all encompassing potty post. Sadly, I could write for hours about issues that we've had with toilet training. And I could talk for days on the subject, and seriously think I have. I have had more conversations revolve around pee and poop than I'd ever imagined I would have. But this morning I don't really want to launch into the potty training history realm.

Back to my original story... Most days, especially in the last 8 months or so, Vicki has had a really wet diaper in the mornings (enough to have to change the sheets almost every morning...) But yesterday morning, her diaper was dry. Woo hoo!! I know I've described our shower sequence in the mornings before, and I usually listen for her to pee or see her grabbing toilet paper, but sometimes Vicki is just sitting and sneakily flushes the toilet. And it's those times that I'm not really sure. So Vicki was sitting and sometimes she talks to herself.. kind of gives herself directions... She'll sit and say make yellow, make yellow. She's said that for years... one day during our intense potty training days, I had assigned a color to things... And because Vicki is very visual, she kind of latched on to the phrasing.. I think it's actually quite genius. :)  So the question remained, did she make yellow? I thought about that all morning when she was at school... and was wondering if I'd get that call to drop off a new pair of shoes... I never got a call for that, thank goodness... So she must have made yellow... or she just has amazing bladder control, which I believe anyway... But I did get 2 calls from the school anyway... And yet again, I don't want to talk about that right now... I would much rather talk about pee. ;) Moving on.

Vicki was so adorable last night... It was a million little things that she did... My heart is still smiling.

Vicki was happy. The kind of happy that lights up her eyes. That little twinkle. I think it's a powerful thing to see in a child's eyes. It is a little slice of heaven to see that twinkle in Vicki's eyes.

Vicki was galloping across the living room floor last night. She was laughing. She was so free. Gosh, I love to see her like that. And I was sitting on the floor by the couch. Vicki was sitting on the couch behind me. She has this thing with feet lately. Especially my feet. Mommy feet. Mommy feet. She'll say. And I'll show her my foot and wiggle my toes and she'll squeal with happiness. She will literally stare at my feet, plop down beside me to get a closer look... fold herself in half with her head hanging off the couch just to see my feet. I joke with my husband that I need to get frequent pedicures because looking at my feet is so reinforcing to Vicki. I don't want to feel self-conscious and have icky looking toes. :)  I'll say anything to justify a hour of relaxation at the salon. :) 

As I was sitting on the floor beside her, Vicki reached out and started playing with my hair. I was pleasantly surprised. She doesn't usually offer a lot of contact... And she never plays with my hair. She just sat there, quietly sat there and stroked my hair. It felt so nice. Amazing really. She was so gentle and relaxed. I could even hear her hum to herself quietly, and repeat the words nice and gentle. Nice and gentle. We've used that phrase before when we would pet animals. We would take her hand in ours and hand over hand pet the animals with her and we would say 'nice and gentle.'  She has taken to that phrase and sometimes when she is playing with her Layse Black Cat stuffed animal, I will see her stroking it's fur and hear her whisper nice and gentle. I was in heaven with my baby girl sitting so calmly behind me, her soft touch on my hair, her aura... so..... I can't find the word I am looking for. But it was one of those moments in time that you tuck away and keep in your heart forever. And bring it back out and remember when things seem so bleak and frustrating. I have this moment right now.

Vicki gave the BEST hugs last night at bedtime too. Real hugs. Not the fake, lean in and touch her head to our chest but doesn't use her arms to wrap around at all. That's the 'I have to' hug. I will comply but not like it. Last night she gave full on, arms squeeze more than a second hug. Ahhh.... again.... a hug like that from Vicki. Bliss. It really is. She was so fun. She was still happy and smiling. And with Vicki, when she is with you and engaged... it is like the best game of follow the leader you will ever play. We were dancing in her room at bedtime. And I would  bust out some moves, and she would follow. I kicked my leg out, she kicked her leg out. We took turns spinning each other. She would lovingly gaze at my feet. :)  These are the best kinds of times. I cherish these moments more than I can ever express.

Even though Vicki doesn't say a large volume of words in a day, the words she does say... they make an impact. (I could probably take a few cues from her. Ha ha... ) Clear and concise. Speaking from the heart. Nice and gentle.

The kiddos have an early dismissal from school today. What can I really accomplish in 4 hours... maybe I should just go get a pedicure and surprise Vicki. :) 

xoxo

Day 22. Year 3.

I'm going for a quick, light and airy post tonight. :) Partly because I am just done thinking and feeling tonight... and partly because they are so fun to write.

There is nothing better than a happy Vicki. And nothing makes Vicki happier than when 'baking' is on her visual schedule. What was on the menu tonight? Blue's Banana Muffins. :) We decided to bake this homemade concoction in those little baby bread tins, so adorable!  We've tried a lot of different muffin recipes but keep going back to the recipe in the back of an old Blue's Clues book we have. Besides the yummy taste, my favorite thing about this recipe is that it is very visual and Vicki has a really easy time following it. There is a matching picture to word in each step of the recipe. And it shows the measuring cups and spoons as well. I love that Vicki is starting to read recipes! Another set of recipe books that we love are the "look and cook" books. The step by step directions and pictures that accompany them are fabulous. I think Vicki (and mommy) learn a lot from them!

We've tried to teach Vicki a lot of functional things through her love of food. Sometimes it works to our advantage, other times it does not. It's amazing how many things you can do with food to teach basic concepts to children. For example... you can start with very basic things such as colors. And shapes. And 1:1 correspondence with math items. Then you can teach categories... we have lots and lots (probably at least 100..) of laminated food cards that Vicki uses... sometimes we use the cards as reinforcers themselves... Vicki loves looking at all of the different foods. We use them for teaching new sight words, we use them for teaching categories... give me all the fruits... give me all the foods that are red... Then she moves onto more conversational items... tell me 4 fruits that are green. The first fruit she said today? Kiwi. Ahhh... I love that girl! Then she came up with grapes, watermelon, and gosh, I can't think of a fourth one right now, but she did... You can teach attributes with food... hot/cold, long/short, heavy/light, soft/hard... etc... We've taken bins of rice for sensory play and started teaching her basic fractions..filling 1 cup of rice... 1/2 cup of rice...etc... You can teach fine motor skills, gross motor skills, following 1-2-3 step directions... the list goes on and on... Sometimes the only limit is my lack of creativity.

But the thing I like the best about cooking with Vicki, and I'm sure I've said this before, is that when Vicki is cooking and baking... she is right there with me. She is engaged. She is happy. And she looks adorable in her apron. ;) And every time we are in the kitchen, Vicki surprises me with something... no matter how little it is... she is always showing me something new... she is always making decisions... And try as I might to stop her, she is always licking the bowl. :)

Like I said, Vicki listens and follows directions really well, in the kitchen. :) She knows where just about every ingredient is housed and enjoys getting each of them out. She loves dumping the ingredients in the bowl and she loves stirring. She was really into stirring tonight, and she did a good job when stirring the flour gets difficult. We got to mash up some frozen bananas for tonight's recipe; she loves doing that. And Vicki has really been using her sniffer a lot lately... she loved taking a whiff of the vanilla and the bananas. She is careful when she spoons the mixture into the pans and if I forget something, she will tell me. Tonight I almost forgot to spray the pans... and Vicki's way of alerting me was... woah. woooah. woahhhh. Mommy. Spray. Please.

Sometimes if Vicki is really excited, she will plop down right in front of the oven and I'll turn the oven light on for her. She will sit there and watch the dessert bake. :) Other times... she will happily skip into the living room and play Barbies while she is waiting.

I love the smell of a good banana bread baking. And so does Vicki. When the bread was ready to eat Vicki opened the fridge and got out the spray redi-whip. Spray redi-whip is a staple in our house. Snow storm a' coming? Get the toilet paper. Get the bread. Get the milk. And get the redi-whip! :) You know that 'Frank's hot sauce' jingle... I put that **** on everything. Vicki could do a commercial for redi-whip just like that. :) And one of the things I love to do is ask her where she wants me to spray the redi-whip. I know I shouldn't do this.... but there are certain phrases... when they come out of Vicki's mouth, you just can't help but smile... And when I ask her where she wants the redi-whip.. she'll point and say, 'right there. right there'. It is seriously one of the most adorable things ever.

Now there are pitfalls and fears in the kitchen as well that we work on. Lots of them center on safety... knowing when things are hot and not to touch them and the big one now is that she is trying to be so independent and she is so darn quick... she will reach for a knife before you even know it. And that scares the begeezers out of me. I like that word. I don't like being scared because she is so impulsive. Other things that we are working on is trying not to keep letting her open the fridge just to open the fridge and stare inside of it. I remember when I was little, my mom would hate it when I would open the fridge door and just stare inside and not know what I wanted. Vicki, well, she just likes to look in the fridge. Everything interests her in there. And when she opens the fridge for a purpose, I have no problem... but when she wants to get in the fruit bin drawer every 5 minutes to look at the mango... that does become an issue. So we came up with a little dry erase board  mounted on the fridge... we have a picture of a fridge with the door open taped to it... and we have 5 boxes drawn. Every time Vicki opens the fridge for pleasure... she has to put a check mark in one of the boxes... when she gets to 5, that's it. She's done. Luckily we've only gotten to 5 once and that was right at bedtime. Maybe she is understanding it, or maybe I am too lenient. ;) That's also a possibility.

Another thing we did with food.. .is that we were noticing that she wanted to bake every night. Of course, who wouldn't want to? And if we just had the generic 'dessert' picture on her schedule she would get really upset if we offered her fruit for dessert. Because hey man, dessert is dessert. A pastry, a cookie, a brownie... Fruit, not so much. And all it took to get Vicki to eat fruit for dessert? Printing up some laminated fruit pictures to put on her visual schedule in place of the dessert picture. And when she sees that cantelope picture in the morning... oh my... she gets so excited. :)  So sometimes it's the simplies of changes that can influence positive behavior.

Well, I guess this wasn't quick. But it was fun. I guess I didn't say much in this post, but there are a lot of words. I have to apologize, too,  because the spell check is not working right now...

... and just like I said in my last post about food... I have a few ideas floating around that I want to write a post on soon... well, I guess it better be soon... I only have one week to go on my 30 days this year... Wow! That was fast!  (I really hope you are enjoying reading my blog this month.)

I love that Vicki has discovered her passion. And I love that she lets me share her passion with her. I hope you are enjoying me sharing my passion with you. xoxo

Day 21. Year 3.

I am an only child. I don't know what it's like to have a brother or a sister at all, let alone to have a sister who has autism. I don't get the sibling thing. I don't understand the dynamics of it all, the bickering, the competition, the protection or the love... It's foreign to me. But I want to talk about it tonight. I also know that I am pretty darn tired and I have a lot of paperwork and phone calls on my schedule for tomorrow... So, let's call this my intro to the sibling thing. I'll continue with parts 1 and 2 over the next few days...

Today seemed like project central at our house. Ally had a Chinese Invention poster board project to do. Joey had to finish a writing prompt for English class and put the 'finishing touches' on his 8 page life science project. And our master bathroom contractor finally came back to start to finish up our 8 year long bathroom project.

It's days like these... heck, who am I kidding, it's EVERYday that I feel like there is not enough of my time to go around to everyone. I look back at the day and think, I don't remember sitting down at all, I feel like I was constantly helping someone do something, and yet, I feel like I did nothing and no one got all the attention and help that they needed. I'm sure all parents feel that way. Here's that word again, inadequate. Kids are needy. Sometimes I feel so overwhelmed with their needs. And I never feel like I give enough, do enough, can be enough for what they need.

I am so thankful that my husband is there to give everything he has as well. And I am thankful that we can have aides in our house to give everything they have to Vicki and to our family as well. You know when you have lyrics in your head that you just can't stop singing... that's me right now....And it goes a little somethin' like this...Tag team back again check baby check baby let's begin (OK, I really don't know the words to this song... ha ha...but I'm singing my heart out anyway. ) Thank goodness for tag team parenting! When each kid needs to be the center of attention it's quite helpful to have 1:1 to 1:1 to 1:1.  And even with that, it still seems like it's never enough. Even with 3 adults to 3 kids Vicki was still able to pop a Barbie shoe into her mouth today and freak us out for a second. And the list goes on and on.

Sometimes at the end of a day, I think... wow... how did we manage that? Pause for bells and whistles and deafening, thunderous applause. Everyone deserves accolades at the end of a day.  Take a bow... it's not easy. I read through facebook statuses and it's always there... Coordinating how to get everything done. This one has to be here at this time, that one has to be there at the same time... It's not the same world as it was 30 years ago where the kids were just sent outside to play and came in when it got dark and they got hungry.

Sorry.... I am all over the place tonight... Bring it back ya'll, bring it back... Here we go....

When I look around... I see the indelible mark that Autism has left on my family's lives... it's everywhere. It's places that I don't even think to look. Do I blame autism for some of my shortcomings as a parent? Probably. It's easy to do. Autism is a good scape goat. Do I think if autism wasn't in our lives I would be a better parent? Maybe. But there's also the question... has autism made me a better parent? Maybe. Who knows...  Would Joey be as sensitive and gentle with others as he is? Maybe. Would Ally be as.... arg... I can't think of the word... would Ally be as protective of some of her things, her toys, her food as she is? Maybe. Or is it just that sibling thing that I don't understand? Possibly...

Every situation you are put in shapes, to some degree, the person you are. Joey is fiercely protective of his sisters. Is it because of some of the things he has seen autism do to Vicki and to Ally and to us as a family? Is Ally as protective of her 'things'  because of some of the things she has seen autism do... and has been on the receiving end of.

The other day, when we were all at the park for Ally's soccer practice... I was watching kids on the playground. There are so many little monkeys on the playground. Gosh, some kids can climb, and hang and swing off those monkey bars... They are so fast and so strong. And I look at Joey and to a lesser extent Ally... and I think about when they were really young...before we had an aide for Vicki... and it was just me at the playground with Joey, Vicki, and Ally. It was never relaxing. It was always stressful. I couldn't be there for Joey or for Ally because I always had at least one hand, if not both hands, on Vicki. Trying to pick her up from a tantrum, trying to keep her from running... Even as I am writing this, I can feel my pulse quicken, just remembering those times. I couldn't help them on the monkey bars because I couldn't leave Vicki. We couldn't stay at the park long, because something usually happened with Vicki. Eventually, it's just easier to withdraw. It's easier to sit in our living room with the door pulled shut and just try to survive.

If it wasn't for autism, would Joey or Ally be that little money on the playground? I know the world of  what ifs are a dangerous place to go to... Maybe my kids just weren't equipped with that monkey gene. Sometimes I just wish I could have given them a real chance to find out for themselves... There are so many little things like swinging across monkey bars... that when I look at it, I see autism.

As I reread this post.. it seems a bit harsh. I just want to make sure you understand. I don't blame Vicki. I blame autism. I don't hate Vicki. I hate autism. Vicki has taught us all some very amazing life lessons. Not autism. But Vicki. My children have seen so much. And I know that they don't take for granted something as simple as going to the playground. Because it is such a big deal to us. There is always so much planning and stress... even to this day, to just go to a playground. They don't take it for granted. And neither do I. We all hear the thunderous applause when we come back from a successful trip to the playground. And we take a bow together as a family. We all do the Dora Dance. Yeah. We did it. We did it. We did it hooray. We got out of the house and walked to the playground. Yeah, We did it. We did it.  :)

My apologies for posting this so late... I couldn't keep my eyes open last night... I need to run... because I think we may have pink eye in the house. Welcome Monday. :( 

Oh, before I go... Here's a little Vicki-Did-It for you.... With a little help from her aide and daddy, Vicki painted her own nails!!!! They look amazing! I was watching the concentration she had when she was applying the polish... and the satisfaction she had when she finished a nail. Priceless. Oh, and did I mention that Vicki painted her nails pink?! She used to only allow 'red nailpolish' on them. Now, this wasn't the whole nail polish exchange... but this is what I choose to focus on and remember. :)  So... yay Vicki!!!!  If you happen to see her pretty pink nails... give her a high five! She deserves it!! Whoomp there is it! Let me hear you say it!

Day 20. Year 3.

Last night I paused outside of Vicki's bedroom and I heard her sobbing. It broke my heart. :(  I went into her room and I could hear her sniffle. Sometimes when she cries she doesn't want comforted. I gently went over to her and she said No. No. And she put her arm up as if to ward me off. Then she curled up tighter in her covers with Layse Black Cat. I stood by her bedside for a few minutes and watched her covers rise and fall in harmony with her little sobs. :(  This morning she had that look like she'd been crying a lot. Puffy eyes. Matted down eyelashes. It makes me so sad. I go back to this all the time. I wish I could help her. I wish I knew why. I wish she didn't have to cry.

I said in last night's post that I would talk about Vicki's doctor's appointment. So I will. We went back to see her PANDAS doctor... (I think I did a post a while ago about when and how she was diagnosed with PANDAS --- Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). If you've been following my blog the last few days, you may have noticed a bit of anxiety on my part. Spring has a bad track record for us. For the past few years it seems like each Spring something different happens with Vicki, different bad, not different good. One year she was in the hospital for 5 days when she had her first seizure. The next spring she had more seizures. The next spring (which was last spring) was when everything fell apart for Vicki and she ended up with the PANDAS diagnosis by late summer. So, I kind of get a little freaky every spring. I feel like I am on heightened alert. Always looking for changes and clues as to what will happen. Do I get a little hyperchondriacal? (I'm pretty sure I just made up that word. I like it. Ignore auto correct. Ignore.) Probably. Anyway... do I see things that might not mean anything? I'm sure I do. Do I see things that might mean something? I think so sometimes... Well, this week.. I feel like I've been seeing things... Little things, gradual declines. Subtle and not so subtle behavioral changes. And I think, Damn. Not again.

The thing is... I feel like Vicki is a pretty unique kid. A pretty complicated kid. (A pretty fantastic kid!) And I am not alone in my thinking... I've had multiple doctors, specialists, analysts, teachers, etc... tell me that as well. Like I was saying the other day. Nothing is black and white with Vicki. There are always so many factors to consider. And with some of her recent changes- setbacks- differences... It's hard for me to look at it and say... Yes. This is a relapse of PANDAS. Or, maybe it's just autism. Or, maybe, she is just having a bad day. Or a teenage kind of day. Whatever...
But whatever it is, some of the changes have not been so good, and I want to catch it before it spreads into other facets of her life.

What scares me about PANDAS is that Vicki is STILL on a pretty significant treatment regiment for it. She's still taking an antibiotic 3x a day (since mid-July). And she's still on some other meds related to treating the symptoms of PANDAS. And I wonder... whoa.... if this is the start of a PANDAS flair up, what the heck else can we do? And if it's not.... well, that sucks too. Because there is no pill to take to get rid of autism. Sigh.
And I think I've said this before... but the latter scenario, where Vicki's changes may not be a direct result of PANDAS... that scares the heck of out me. Because even though PANDAS is horrible, horrible, horrible... once we got to the right doctors and started the right treatment, Vicki started getting better... Slowly, but we could see it. And if it's not PANDAS and if it's just autism, well...

The PANDAS doctor set forth a somewhat different plan of care this time when we went to see her. And what makes me super nervous is that it's going to depend on a series of things to happen for us to get the treatment that we would all like to try and feel is necessary for Vicki. And like all things medical, it will depend largely on test results (of which a new test was recently approved but not likely covered by our insurance. Bye bye 900+ dollars for that). Once we get our doctor to write the script for the test, and find a lab that will draw the blood and send it off, we will have to wait, of course, for the results. If there is no significant finding, then... well... that's about it. If there is a significant finding, then we start the insurance dance to get approval for IVIG. Not approved, it will run us at least 15,000 for 2 days of IVIG. And, like with most things in life, there are no guarantees... no guarantees that Vicki's labs will end up showing high enough antibody levels... there are no guarantees that insurance will cover the treatment, and there are no guarantees that the treatment will be successful. So, what I see in our future... is more tests and doctors for Vicki. :(  More days off work for my husband. :(  and more coordinating, calling, scheduling, faxing, writing and researching for me. (Notice my list is longer. Because that's what I do... make it seem like everything is so hard for me... me... me... me....)
And I think what scares me the most.... because for years now I've had this gnawing feeling in my gut that IVIG will do amazing things for Vicki (I think I've told you some of my hypothesises before... I had IVIG when I was pregnant with Ally...)... what if things actually pan out and Vicki gets IVIG? And nothing happens. That's been a door that we've kept propped open for years. What if it gets shut? Then what?

I guess you just keep chugging on. Keep taking it one day at a time. Keep making those Vicki-did-it lists... and keep smiling. And keep believing. And keep celebrating. And keep on keeping on.

And guess what? Vicki wasn't crying at bedtime tonight! And Vicki didn't have any poop accidents today! And Vicki went for a walk today (granted, daddy had to go to help... but still, Vicki went)! And Vicki came to Ally's soccer game and sat outside in this most awesome spring weather and colored the most beautiful princess pictures. AND we had an impromptu dinner outside on the deck (meaning it wasn't on her schedule) and she did it. She smiled. She ate her homemade pizza and salad with ranch dressing. And she enjoyed the fresh air and the spring. If I look at spring differently, if I see spring in Vicki's twinkling eyes and slow little smile and the little breeze blowing through her hair... if I think of spring in this way... maybe I won't be so scared and maybe I can just stop and take a deep breath (and then sneeze because of my pollen allergies... ha!) and keep on keeping on.

xoxo

Day 19. Year 3.

I've been thinking a lot today about some beautiful comments and notes I've been receiving from you... First off, thank you. xoxo  Second, I tend to re-read my posts from the night before the next morning... just to see if I was actually awake and coherent when I was writing. :) Sometimes when I re-read my post, I think, ugg... that was absolutely terrible. Other times I think, wow, I am the wittiest person I know. :)  Anyway... as I was re-reading my post from last night... and reading some of your touching comments... I started thinking about things a little more... And on my facebook feed I saw a link posted from Dove's new ad campaign... have you seen the clip? It's called, 'Real Beauty Sketches' and it features a sketch artist drawing 2 portraits of the same woman, one as the woman describes her own features, and the other as someone else describes her. Then the woman gets to look at the 2 sketches side by side and she sees how she sees (wow that's a tongue twister!) herself and how others view her. I've read a few articles written that slam the campaign for still not using 'real women' ... But whether you agree with how Dove peddles their ad campaign or not, the idea behind it is interesting.  I think what it boils down to, is that everyone can be amazing. And no one really sees themselves as others see them. I think most people feel inadequate and feel like they don't measure up to whatever outrageous standard they hold themselves to. And as I was describing that 'perfect mom' scenario in my post last night... I took bits and pieces of her from real women I know who never cease to amaze ME. So she's out there, that 'perfect mom', because she's you and she's me, and she's that lady in the store that has one screaming toddler sitting in her cart grabbing for the candy and the infant asleep peacefully in the moby wrap on the mom's chest, and she's the mom who stays up until 2:30 in the morning baking that perfect cake for their child's birthday, and so on and so on. We all work our butts off. We all have moments of amazing. And we all have 'oh shit I suck at this' moments too. But if I can learn to somehow balance the amazing with the oh shit, then, that's not too bad. I'm just your average mom. And that's good enough for me and for my kids. :)  Any who... thanks to everyone who sent me messages. Sometimes we all just need to hear that we did a good job.

You did a good job today. :) 

Well... now... moving on to today... First let me check off a few things on Vick's Did-It-List. Guess what? There were no more cherry granola bars today. I took a deep breath and offered her the choice between a strawberry granola bar and an apple cinnamon granola bar. She chose the strawberry. A victory at 8:30 this morning. Pretty good way to start off my Friday!
Let's see... what else did she do? Remember how I told you today was our 'doctor date'... Vicki likes to go out for lunch after a doctor's appointment. And lately she's been wanting Ruby Tuesdays after each appointment. Some days we do it and go to Ruby Tuesdays... and other times we try for a different restaurant. But usually we'll cycle through the ones she really likes... Applebees, Ruby Tuesdays, Chili's etc... Today we decided to try something 'different'. Tropical Smoothie Cafe. Yumm-o! I think I've said this before, she's the only one of our kids who really knows how to eat real food. :) She's got quite the mature palate... she loves exotic things... like olives and hummus and those red onions and cold lima looking beans in salad bars... :)  I call these exotic because it's not pizza and chicken nuggets and mac and cheese. She likes those too... don't get me wrong... she LOVES mac and cheese... Anyway... We got out of the van at the Tropical Smoothie Cafe and she skipped inside once she saw the smoovies (as she so adorably calls them). (As an aside... I know I should correct some of the substitutions she uses for letters... but let's face it, sometimes what they said instead is so darn cute... it's hard to make them say it right.)  I love places that have pictures of food on their menus. Not only is it appealing to me when I go to order.... we all like to see what we're gonna eat... But for Vicki, it's especially nice since she is such a visual person. We asked her what she wanted and gave her the choices of chicken, turkey and whatever else they had. Chicken. I want it. Chicken. Then we pointed to the menu and asked her if she wanted a wrap or a flatbread sandwich. She immediately said wrap... then looked again, back and forth, and changed her mind. Flatbread. Flatbread. Chicken. Flatbread. It was great seeing her really think about it and choose what she really wanted. Not what she was used to. Or not just the first choice. But her choice. :)  Chicken pesto flatbread sandwich and strawberry yogurt smoovie. Victory.

Oh, and the last thing I wanted to check off of Vicki's Did-It-List today... She said yuck. That seems like an odd thing to be excited about. But I am. I don't know that she's ever said 'yuck' before. And she said it when she was eating some pineapple and mango tonight for dessert. I guess there was a hard piece of the pineapple core or a little brown spot or something on a piece of the pineapple. And she didn't eat it. She said yuck and she left it in her bowl. That's a pretty big deal for Vicki. And a very appropriate thing to do. You see, sometimes I don't know if she understands that she can leave food on her plate. She doesn't have to eat everything. (Well, heck, I don't understand that ;) either.) Anyway... I often wonder if she understands what it means to be full. Or to taste something and decide you don't like it or want it. I think it was this past fall... we were having issues with school lunch peas. Vicki just had to get them. But we didn't think she actually liked them... she was doing a lot of really strange things as she was trying to force herself to eat them... It took a few months before she was able to move through the line and not choose the peas. It was ok to not like them and not eat them.

Well... I wanted to talk tonight about Vicki's doctor visit today... But I guess I had a few other things on my mind... and I don't want to think about all the things associated with her doctor visit right now. I'll write about that tomorrow... hopefully. Right now I'm going to go watch a movie with my amazing husband and partake in a glass of wine. Maybe I put the wrong kinds of pressure on myself.. if my to-do-list had 'enjoy a hour with my husband and drink a glass of wine' maybe it would force me to make the time to do that. I think I will. That will be amazing. ;) 

xoxo

Day 18. Year 3.

Have you seen the meme that's been circulating lately on the interweb? ;)  (I think that's what it's called... isn't a meme one of those funny picture sayings with the colorful backgrounds that sometimes make you laugh out loud at the computer when no one else is around?)

Men: If you ever want to know what a woman's brain feels like, imagine a browser with 2,857 tabs open. All. The. Time.

That's kinda what I feel like tonight. I just keep opening new tabs up in my head... I need to do this... I have to finish that... then I become overloaded, and I'm pretty sure this computer is about ready to crash. It's been a long emotional week so far, and it's far from over...

I don't know what to talk about tonight. I might just be all talked out. Eh, my husband would beg to differ on that comment. I had to stop and fill up our van's gas tank today for our ' doctor date' tomorrow with Vicki's PANDAs doctor. And as I was filling up the tank, I kept thinking about how I need to fill up my tank, because I feel like I've been pretty much running on empty. Analyzing autism is exhausting.

I've been thinking about that a lot this week. With Vicki's behavioral decline over the past few days... I feel frustrated. I feel scared. I feel angry. I feel sad. I feel exhausted. I feel. I feel.
And the worst part, always the worst part...is that I don't know how Vicki feels. :( 

What I do know is that it's hard to be 'on' all of the time. Do you ever just watch other parents, other moms, who when they talk to their kids... you think, are they always 'on' like this? Do you know what I mean? They always seem to have just the right thing to say to their kids... just the right thing to do for their kids... They always seem so put together, and just so 'on'. They seriously must have read every parenting magazine from front to back, heck, they probably wrote some parenting books in their spare time. I bet they got up at 5 am, went for a run and then did some yoga, had their kids all finish their chores before they went to school, had their healthy lunches packed the night before, went out and worked a 10 hour shift at their full time job, came home, found time to make a yummy sit down dinner straight from the pages of pinterest, got their kids to all of their activities, helped with homework, put the kids to bed by 8, and spent the evening with their husband drinking wine and finishing up their homework for their class they are taking to get that second masters degree. In my head that's what every other mother's day looks like.
I feel inadequate. And using autism as my excuse only gets me so far.
Hmmm.... I didn't mean to post about all of this tonight. I just heard Gavin Degraw's Sweeter a little bit ago... maybe that's why this particular tab opened in my mind. ;)

I just wanna take
Someone else's holiday
Sometimes the grass is greener
And someone else's sugar
Someone else's sugar
Sweeter

Anyway... I started talking about being 'on' all the time. I was thinking about that this morning as Vicki and I were hunting for a cherry granola bar for her to eat for breakfast. And again that fear creeps up inside of me. Seriously, fear materializes because I am not sure there are anymore cherry granola bars? Yep.  Would today be the day a cherry granola bar would make or break our day? I found one. Phew.  I will defer this until tomorrow...

You would think that by now I would have a good understanding of behaviors... and how to analyze them. I took some classes a few years ago so I could understand. I got all A's. That means I know it, right? But you know yourself, applying something is so much harder than just knowing what you should do. Nothing is ever black and white. There are always 50 shades of gray. Damn. And now I opened tab #2858. ;) 

But seriously... literally in EVERY single interaction I have with Vicki, I am nagged by the little voice in my head... I am constantly second guessing my decisions. ABC. Easy as 123. Antecedent. Behavior. Consequence. Easy as 123. No. Not really for me. I think... crap... should I have picked this battle? should I have responded in that way? Did I just create another obsession for Vicki? If I do this one, will it become a 'have to' for Vicki to do all the time? Should I take away this magazine because it is looking really ratty and torn up? If I take it away, will Vicki notice? Of course she will. Do I want to fight that battle today? I don't know. It's every. little. thing. I didn't read about this in my book.

I'm probably not making any sense tonight... my computer screen is starting to freeze. Gosh I am so funny sometimes with my analogies. :) 

Let me leave you with a sweet anecdote from Vicki tonight. She was playing Barbies. And that in itself is a big Yay!! She was looking at her one Barbie and I hear her say. Barbie. Doctor. Boo. Boo. So I looked at her Barbie doll and it seriously looked like Barbie's hand had some dry skin or sunburn... some of the plastic was peeling off. I picked a little bit of it off and then I got one of those tiny circle band-aides out and put it on Barbie's hand. I gave it back to Vicki and she smiled that cute little Vicki smile that I just adore. And suddenly all of my inadequacies fade away. I fixed Barbie. And Vicki was happy.

If only I could put a band-aide on autism for Vicki. How I wish I could sweet girl.
Oh, ps.. I'm not a sugar kind of girl. I, myself, like equal. Thanks for listening. xoxo

Day 17. Year 3.

Before I start in on tonight's post, I just wanted to say Thank you! Thank you all so much! I didn't mean to freak everybody out. Yesterday was a bad day. But it definitely wasn't the worst day I've ever had. And it was no where near as bad as so many of the days we had last spring. I think everything just kind of fell apart, including me. I was so humbled by all of your texts and messages and prayers. Really. It is nice to know so many people care. And it is nice to know that there are some people out there who read and follow my blog... it makes me feel less like I am talking to myself. :) And the less I talk to myself, and answer myself, the better. :)

I am in much better spirits today. There were lots of things today that were just as bad, if not worse, than yesterday... But there were a lot of good things today too. And I choose to focus on them tonight.

First of all... I wanted to let you know about Vicki's necklace. At 7:50 this morning, Vicki asked for her necklace. (And by 7 am, I had already heard from quite a few of you with thoughtful words and prayers). It was really quite amazing to me. As Vicki was asking for her necklace, it was as if I felt all of you thinking about her and praying for her at that exact time. And it felt so nice. It felt so nice to know that even though Vicki and I were alone in the bathroom getting ready for school, we were not alone at all.

I know I sound like a broken record, but Vicki never ceases to amaze me. Vicki asked for her necklace. I paused, took a deep breath, and said, necklace is broken. Vicki looked at me and repeated broken. Then she paused and said glasses. And that was it. She had moved on. And we went about our day. (There were a few times this morning though getting ready for school where there was hesitation on Vicki's part. And that still makes me very nervous. But we did it. We got to school.) And you would not believe where her necklace was. I guess it had fallen off at school and it was in a Ziploc baggie in the bottom of her backpack. I just didn't know it. So, all good things. Vicki was able to do something different and not wear her necklace this morning. (Which may be a good thing because she has been putting it in her mouth a lot lately.) And we still have the necklace that means the world to Vicki. The necklace Ally gave to her Big Sis.

Moving on.... another way to lift your spirits... do something for yourself. So I did. I colored my hair, not because I wanted a new color but because graying hairs makes me feel stressed and old and very, very icky. I washed a little of that gray right out of my hair, and along with that, just a wee bit of stress.

'Tis the season for IEP meetings and ESY meetings and BIP meetings and Triennial meetings. Today my husband and I had Vicki's triennial meeting. As I mentioned yesterday, I really don't like reading standardized testing results and reports. They depress me. Those papers and those numbers are not Vicki. I know Vicki and I know how brilliant and beautiful and amazing she is. And you are not going to find that in any one report. And that saddens me. There is no one that I have ever known before in my whole life that works harder than Vicki. And if you look at the numbers, the numbers don't show you the grit and determination and perseverance of this little girl.

Anyway... even thought I don't like reading the reports, I do like dialogue. Because I am with Vicki and see Vicki and know Vicki's every move... I think it tends to make me less objective sometimes. I end up falling into tunnel vision with Vicki and I get complacent and don't try to shake things up at all. When I read observations that others, who don't know Vicki like I do, make... it's very interesting to me. I see things that I didn't see before, or I see all of the time I don't see them anymore. I really don't think that sentence made sense, but I know what I am trying to say. I am just so involved in everything Vicki that I lose sight of some very obvious observations. Anyway... it's interesting.

Do you want to hear something really bad? Sometimes I look forward to school meeting days, not because I like meetings... no I really don't like meetings. I tend to cry a lot before and after. I never feel like I do enough for Vicki. But... one of the reasons I like meeting days is that my husband takes the day off work... and after our meeting, we get to go out on a lunch date. We haven't gone out on a 'real' dress up go out to dinner and a movie or go have a drink date in months and months. Our dates tend to include Vicki, when we grab lunch after a doctor's appointment. :)  So today, after our almost 2 hour meeting, we went out to lunch. Tropical Smoothie Cafe baby. :)  And then we went to Lowe's. :)  We were going to go to Bed, Bath, and Beyond... but there just wasn't time. (movie quote, anyone?)

I'm going to skip over some of the not so good stuff today... again because I am just not comfortable talking about it right now... But I will say...well... autism. you suck. again. Big time. And I hate what you do to Vicki and to me and to our family. I hate the stress and I hate the tears and I hate, hate, hate the fear. As Vicki gets older, I have become more cognisant about how autism affects me. And I hate to say this because this makes me feel weak, but I am afraid of Autism. I really am. Sometimes the fear of what could happen is almost paralyzing to me. Autism does not just socially isolate the child. Autism isolates the parents and the family as well. Fear isolates me.

I'm done with that for tonight. I'll come back to it later.

I want to end tonight on a positive note... Yet again, Vicki never ceases to amaze me. I know I've told you how important Vicki's visual schedule is to her. She holds that pink binder with the velcroed pictures on it like her life is depending on it sometimes. And maybe it is. That schedule helps her to see what to expect, to know what's coming next, to anticipate, to prepare. Very rarely do I deviate from what she has posted on her schedule. But tonight... oh tonight was such a beautiful spring evening. The weather was perfect. And today is my crappy 'run the kids to just about everything they are involved in night' all in the span of 3 hours...Vicki had dance class. Ally had soccer practice and scouts. Joey had a physical fitness assessment for a merit badge he is completing and then scouts. So, tonight was my chick fil a cheat night. :)  I normally run Vicki and her aide home after her dance class. But tonight I didn't. Even though home was on the schedule after chick fil a... I took her to Ally's soccer practice. (It helped that I knew my husband was there and could help us out with Vicki if we got into trouble.) We had a blanket in the back and we asked Vicki if she wanted to have a picnic outside and play on the playground. She gleefully got out of the van clutching her half eaten chicken sandwich and skipped with her aide down to the grass. The wind was blowing, her ponytail was bouncing and she was happy.
And there is nothing more than I could ask for. xoxo

Day 16. Year 3.

I wanted to post a feel good, happy, upbeat post tonight. I really did. But I post how I feel. And I feel spent tonight. Today was one of the hardest days that I've had in the past few months.

I feel guilty for the way I feel, like I have no right to my feelings today. So many families woke up this morning, forever different, forever changed because of one moment in time yesterday. One moment, a split second. Lives are lost. Limbs are lost. Bodies and minds are scarred with images no one should ever see.

And here I am this evening... crying my eyes out. For who? For Vicki and for me. I'm selfish. I'm selfish and I know it. (Da-ta-da-da- da- da-- te-da) wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, yeah. (sorry, I've been so upset  all day, I need to make myself laugh sometimes. And, boy, I am hilarious. :)

I hate autism. There. I hate autism. I really do.
Autism. You suck. Autism you suck the life out of me, you suck the happy out of me, you suck the money out of me, you suck the time out of me. You just plain suck.

Eh. I feel a little better.

I know I've said it before, everyone who deals with autism says it, but autism is like a roller coaster... up and down and up and down. It knocks me for a loop. And because I don't particularly like roller coasters anymore, I feel sick just talking about this. We are chugging along, creaking up that big hill... anticipation growing... bracing ourselves for the fall we know is coming.  And then we are at the top. Might as well just throw our hands up in the air and scream. Because the fall is so hard and so fast it makes my stomach lurch. There's nothing you can do to stop it though. One the ride starts, that's it. You have to stay on it.

I know I'm being very cliche and very vague. Some things that happened today I just don't have the strength to get into and I don't really want to. Maybe it was just that so many little things (and big things) happened today. I am just overwhelmed right now, at this moment in time.

For instance, I'll share a few of the little things... this morning when I went to get Vicki up for school, she had peed in her diaper again, a lot, which like I said hasn't been all that unusual as of late... but, still, it doesn't start the day out great when I have to wash sheets at 7:30 in the morning. (And I try to be positive... and grateful... that it was only pee on the sheets. And that it was 7:30 and not 3:30 in the morning... right? I am. I am grateful for that. But still, autism. You suck.)

Then as I am taking the sheets off the bed, I see a small piece of plastic by Vicki's pillow, it's very sharp too... I pick it up and wonder about it all day long. Where did it come from? (And yes, here I am grateful too... I am grateful that Vicki didn't put that in her mouth and get it stuck. I can't imagine the damage it could have done. And I am thankful she didn't cut herself with it.) But, where did it come from?  I finally solved that mystery tonight as we were putting Vicki to bed. We had to change the electrical outlets in her room years ago... we couldn't have them down low, so we got covers for the outlets and ran the outlets up to the tops of her walls... There is a plastic outlet cover screwed into the wall by her bed... and when she lays (rather jumps, slides, plops loudly) into her bed at night, the whole bed moves. So last night  the bed must have moved just so... so that it cracked a sliver off the side of the plate. Little things...

Then today I see the school's dreaded number on my cell phone. My heart always drops into my stomach when I see that... and today rightly so... I won't go into details tonight... but Vicki had some behavioral issues that we need to address, again.  More meetings. More talking. Sigh. Autism you suck.

And then after school... the walking that we've worked so hard to bring back... that we just started succeeding with. That we were just feeling comfortable again with. 1:1 walking around the neighborhood with Vicki. Seems like such a simple task. Let me tell you, it is not. And today, well, it was not pretty. She dropped to the ground 3x today. And if Vicki doesn't want to get up, Vicki won't get up. And it is scary. By the side of a road. Just hoping and praying that Vicki will stand up and start moving again. It wasn't even me that had her on the walk today, yet when Vicki's aide texted me, I started shaking like it was me. Autism you suck.

Autism scares the shit out of me. And oh, yeah, Vicki had another poop accident tonight. Autism you suck.

None of these instances, in isolation, would necessarily make or break a day. Well, maybe... some of the behaviors that I didn't really get into would, and have. But put all of these together, and what do you have? One very tired and broken mommy tonight. And the icing on the cupcake? I was sitting on the couch with Vicki trying to catch my breath and I was doing some light reading. triennial testing results for Vicki. I think that I am above reading test results and scores. I know that these standardized tests don't measure who Vicki is or what she is capable of. But it still doesn't make seeing it in print any less painful. That packet of paper is no more Vicki than some of the behaviors she demonstrated today. That was autism. And oh yeah, autism you suck.

Oh, but wait... here's what put me over the edge tonight--- when the tears started flowing too freely. As I was sitting beside Vicki, I gently started rubbing the top of her back and the back of her neck. And then I realized, I don't feel Vicki's necklace. I know I've mentioned Vicki's necklace on my facebook page... but she got it as a gift from Ally right before Valentine's Day. And she has worn it every day since then. She loves that necklace. The half of the magnetic heart that says 'Big Sis' on it. And Ally has the other half that has 'Lil Sis'. Vicki's necklace is gone. And when Vicki realized it, she looked up and me sadly and said, 'heart necklace. Ally. Big Sis' And I started crying. I retraced her steps on her abbreviated walk today. Joey took me. And he held my hand and gave it a squeeze. And he said, 'Don't worry mom. I'll buy a new one for her.' And it made me cry even more.

And I cried today in the car, after school... I made Ally late for her gymnastics class because I was uncomfortable leaving Vicki and her aide alone.. And Ally sat quietly on the chair and waited and when we got in the car and got to gymnastics 10 minutes late, she said 'That's ok mom..I understand.'

Autism. You S.U.C.K.

Gee. I thought that bitching and moaning about autism would make me feel better. It didn't.

And I think I know why. Because. Because I didn't appreciate the fact that Joey doesn't suck. And Ally doesn't suck. And Vicki. My beautiful Vicki. She doesn't suck. Autism might, but Vicki doesn't.

I can't let today go without checking off a few boxes on Vicki's-Did-It List. Especially today. Vicki wore a new bra to school !!! Woo hoo!!! Go Vicki! Not a sports bra, but a real snap in the back bra!
And Vicki asked to pee in the potty 2x on her own today. Woo hoo! Go Vicki! And Vicki said 'ouch. hurt.' as I was combing her hair this morning. Woo hoo! (not that it hurt! but that she verbalized it!) Woo hoo! Go Vicki!

There. Now I feel a little better.

So, if you would tonight... please say a short little prayer for Vicki. That tomorrow is a better day. And that when she doesn't have her necklace in the morning to put on.. that she is ok with that. And that that one moment in time doesn't define her tomorrow.

Thanks for listening. I know it wasn't pretty. I think it kind of sucked. xoxo