Maybe I'll get in the groove of writing as the month is ending. :) So, onward to the final part of this 3 part thought... Back in the beginning of April, when I started writing about Ally's experience with modeling and how it intertwined with Vicki, something kind of cool happened on the first Saturday of April. Of course, as everyone is well aware, we are in the middle of a very difficult health crisis in the world, and we are doing our part being safe and quarantining. Like I kind of alluded to before, a lot of how our family life is structured is very different from other people's families. And in that regard, yes, there are still a lot of changes we have made with the quarantine, but, unfortunately, a lot of the time, we tend to self-quarantine our lives on our own terms. Over the years, we've recognized situations that are very difficult for Vicki and subsequently, our family, and we try to balance what we do to maximize everyone's comfort and enjoyment. Every family unit does that, right? Anyway, with Ally's modeling over the past year, we have definitely stepped out of our comfort zone. But always still tried to balance how we approached events to maximize everyone's comfort and enjoyment. And we always have to plan for the unexpected. A seizure, a behavior, a toileting accident, difficulty and inability to transition from one place to another. So for each event Ally has had, we've thought long and hard about how best to handle the day.
Some days that looks like a long drive and a movie in the van for Vicki, Daddy, and her aide while I take Ally into a rehearsal. Then we would all go out to dinner, which of course everyone loves, and drive home. Other times we've done hotel stays. And still other days it's just too difficult and we have an aide come to the house to stay with Vicki for the day, after I get her up and ready. Then Vicki gets to relax on the couch with Skipper and watch Tasty food videos on her tablet. The last 6 months have been extremely busy on the weekend (pre-quarantine). There always seemed to be a rehearsal, a fashion show, a photo shoot, a model call... And, it's definitely been a challenge to make sure it runs as smoothly as possible. One of the things Vicki has always loved and feels comforted by is looking at her visual schedule when she wakes up in the morning, and then when she comes downstairs she looks at the wall calendar that I write pretty much our whole lives on. I've always color-coded activities. Blue for Joe. Red for Vicki. Green for Ally. And there has been a lot of green writing lately. Vicki looks and takes in a lot more than I ever give her credit for. I've said before how she has such an amazing memory, especially with dates and things we have done on those dates in years past.
Sheesh. I go on and on, don't I? Anyway, with the quarantine, I've obviously crossed out a lot of previously scheduled activities, and the next few months are looking pretty bare and not too colorful. Well, on that particular Saturday in the beginning of April, she must have been looking at the wall calendar the night before, and when she woke up the first thing she said was "Fashion Show" and then "Ally". She was very frustrated that there wasn't any car on her schedule for the day or a picture of Ally (what I put on when Ally has an event). Also, a few weeks before that I had gotten Vicki 2 dresses and a new pair of shoes that she had tried on at home. I had been planning on getting tickets to a ball here in our town. I had seen it advertised in years past and was looking forward to the day when Vicki was old enough, and in a place that I thought she might like it. This was the year I was going to do it. With timing, everything seemed right. Ally has been taking voice lessons since the fall, and it was her voice teacher that was the founder of this ball for young adults with special needs. Ally had signed up to volunteer for the whole day. We had an aide that was available and excited to attend with us. And then I found those 2 dresses. She looked so beautiful in both. Vicki would never go to a high school prom, and I thought this would be something just for her. A way for her to dress up like Ally does, a way to experience something unique. I'm telling you all of this because of course, with the quarantine, the event had to be canceled.
So that Saturday, Vicki was asking for "Fashion Show" and she was very emphatic that day that she wear one of her beautiful black dresses. I kept telling her that we were not going anywhere for a fashion show (it's been very difficult to explain why we aren't getting in the 'red van car' like we usually did on the weekends to go for a drive.) But I did tell her that she could have a fashion show at home with Ally. Some of our flowers were starting to bloom, and I thought, why not? Let's put on a fancy dress and celebrate the day. The only time Vicki will allow make-up is on a very special day (when she used to do dance recitals, if there was a special event we were all going to, seeing Santa... those are all very special days in her book!) And that day, because she put on her fancy black dress, she let Ally do her make-up. It's so rare that this happens, but I love it so much. Ally is so gentle and sweet with Vicki. That day marked the first time ever that Vicki had a 'full face' put on. Foundation with the little spongy thing, bronzer, highlighter, the whole deal. Because Vicki tends to have specific routines (ie... she only ever allows blue eyeshadow and red lips, because that's what they were required to wear for dance recitals years ago). Well, this day, she allowed Ally to do some different colors. Ally was thrilled. Vicki did so well. Ally let Vicki try everything, touch everything, she explained everything she was doing to Vicki. Sometimes it can be a daunting task to do something different with Vicki. She has some resistance, which can be vocal or physical. But we made it through the whole process with minimal issues. And yes, there were tears in my eyes, through pretty much the whole process. It is not easy for Ally to connect with Vicki in a 'typical' sisterly way. Vicki doesn't allow much interaction. It's always been tough. But that day, the shared interest in make-up, not playing out how you would typically envision with sisters... their roles are reversed, but it was something that they enjoyed together. The younger sister leads, the older sister follows. When Ally was drawing on Vicki's eyebrows, I lost it. As most of you know, Vicki also has trichotillomania. She has significant anxiety and OCD and gosh, I think it's been 3 years now?? 3 years. Of me drawing on eyebrows for Vicki every morning. She has very minimal lashes (just some on the lower), so we couldn't do mascara, and putting lashes on is still way above our comfort level. But just seeing Ally lovingly drawing on her eyebrows, being so gentle and encouraging... I have tears even now as I type this.
So, that pretty much sums up the day. Vicki looked absolutely beautiful. The girls had a moment together that I will never forget. We did a "Fashion Show" for Daddy and Joe and Skipper. And we had a photo shoot outside with the flowers. Although this was not what Vicki asked for, per say, we made some memories. Vicki didn't love the rest of the day. She knew that what we did wasn't what she wanted. She wanted to get in the car, go for a drive, dress up and see Ally walk in a fashion show. We made the best with what we could do. She got to wear her beautiful dress, maybe not for the ball I was envisioning this year, but there is always another day, another time.
Ally's modeling may have taken us all out of our comfort zone, but it has given us all so much as well. It has forced us to create and be present and put all of us out there. If you remember last year, I wrote about the first fashion show Ally did, and how the organizers were so wonderful to us to ensure a successful day for Vicki...and there are photographers who have gone out of their way to include Vicki in photo sessions with Ally. We had one photographer in particular, who had known Vicki would be in the car with Dad, waiting for Ally doing her shoot on a beach. She specifically asked about Vicki and what she liked, didn't like, how she interacted etc... And that day the photographer wanted to take some pictures of Ally and Vicki together. Yes, there were difficulties, but there were also moments that I will never forget. Funny, how currently I am now humming the theme song to The Facts of Life, (remember that show??)
"You take the good, you take the bad, you take them both and there you have the facts of life, the facts of life...."
So, in conclusion, :) I think we are all ready to start putting colored markers on our calendar again. I believe with my whole heart that Vicki loves the events in the green marker in her own way. And I will forever be grateful that Ally can share this part of her life with her sister. It may look a little different than I imagined years ago when I had a 3-year-old and a newborn baby girl... but it makes the heart feel just as full. Love you all. Thanks for reading. xoxo
PS... I will most definitely attach a few pictures to this facebook post for you to enjoy - that deal specifically with this post. And, if you want to follow Ally on her modeling journey, I know she would love the support... @ally.rosette (on instagram).
Next blog post is one I have been dreading writing for some time... stay tuned.
Tuesday, April 28, 2020
Monday, April 27, 2020
Day 3. Year 2020. Part 2.
Better late than never, right? ;) I've tried to sit down and write a few times, but, crazy as it seems, I feel like I've been even busier the last few weeks than usual. I typically have a lot of meetings for Vicki anyway, but it seems like they have quadrupled lately, and I feel like I'm zooming from 1 to the other. (See the play on words there? Ha.) Technology is so amazing and so frustrating at the same time. And with Vicki turning 18 in a few weeks, we've had a ton of other things to take care of (a future blog post for sure).
Back to my Part 2. If I can remember where I left off... I was talking about decisions and how 1 decision can affect so many other aspects of your life. BTW, thank you for the sweet, positive comments about Ally and her modeling. It is much appreciated, and the support you show for her as well, we are grateful for.
One of the things I've learned about modeling this last year... it's not just a cute side hobby for Ally. She is very serious about it and treats it very much like the career path she wants to take with it. She's dedicated, professional, and very committed to improving her craft. It's not just "smile, say cheese." There is so much to learn, to study, to promote, to improve upon. She's invested, and she is constantly putting herself out there.
And this is where it gets a little tricky. Those that have followed Vicki's journey for a while, remember that she's always had difficulty with transitions. And back in 2012 (seriously!!! that long ago???) she was also diagnosed with PANDAS. We thought at the time autism was difficult. Autism was a walk in the park compared to the struggles that PANDAS brought. Sorry. I need to take a second. I just feel like I was gut-punched. Thinking that it's been 8 years. 8 years. 8 years since so much more started changing for us. And it's been since 2015 (so, 5 years!!) since I've been able to take Vicki somewhere in the car by myself. Pretty much 5 years now that the only way we can get Vicki in and out of the car is if my husband is there. Do you know how scary that is for me? It's terrifying. When he has to travel for work... there are so many 'what ifs' that seem so far-fetched, but I need to be prepared for them and plan for them. Sorry, I digressed a bit... Squirrel!
Anyway, this all relates to Ally and her modeling. For years, Ally has had to deal with things that a lot of her peers never had to think about... Simple things, like jumping in the car for a spur of the moment trip to the store or out for ice cream. A friend asking Ally to come over and hang out. Soccer practice. A dance at school. Going to a girl scout meeting or an activity. Going to guitar lessons. None of it was easy. And a lot of the times she wouldn't even ask because she knew it would be difficult to plan for and might not be able to go. We've had an amazing support system over the years tho, friends that went above and beyond to make sure Ally was included in things. And I had to finally swallow my pride and ask for help. Some things we were able to keep going with much help, other things people made exceptions for and worked around our home life ( ie.. Ally's guitar teacher came to our house to give her lessons) and some things Ally ended up quitting. If my husband was at work late, and we didn't have an attendant at home for Vicki, there was no way we could leave the house. Period.
So... fast forward to Ally starting to model. One of the things Ally loves about modeling is the social aspect of it. Making connections. Meeting new people. Planning. Rehearsals. The hustle and bustle of long show days where a make-up call time is at 8 am, and the show doesn't start until 6 pm. And, obviously, because Ally is a minor, I need to accompany her everywhere and be there for all of it. That poses some very unique challenges. And that's where I sometimes just stop, and think, how is it possible that people come into our lives just when we need them??
Right about the time Ally started getting booked for fashion shows and photoshoots, she was also given an awesome opportunity to go to Texas for a modeling expo where she could attend seminars, learn from others in the industry, and participate in events and competitions. Gosh, how I wanted her to be able to go and experience all of it. But, we put it out of our minds. I can't take Ally out of our house at all unless I have an aide scheduled and everything is lined up for Vicki. Vicki won't get out of bed unless I get her. So, a week in Texas... there was no way I could be in 2 places at once. Doesn't every parent wish they could at 1 time or another?! As I sadly thought about how difficult it would be logistically to do anything with Ally to foster her love of modeling... I get a text from an aide that used to work with Vicki. Throughout her college years and beyond she was a staple at our house. Even after she moved across the country, she was still a part of our lives. We were thrilled a few years ago when she moved back to VA, and she was able to come and see us from time to time. She had started working with Vicki right around the time Vic was diagnosed with PANDAS, so she's been through a lot with us. Making a long story somewhat short, the timing of her text was pretty much perfect. Over the course of a few months, she had moved back home and was free to work with Vicki. I had joked with her about the timing and how perfect it was and that she needed to road trip with us to Texas to be with Vicki so Ally could attend her modeling event. Vicki was comfortable with her because we've known her for years. And right around that time my husband took a job for a different company and he started working from home. After 18 years of commuting on I95, he was working from home. So he was able to drive us all down to Texas and work out of the hotel room for that week, while our aide and Joe helped with Vicki and I was free to be there for Ally and her events. Now, even with that, every day took massive amounts of planning and the whole team of us to make sure everything that Vicki needed from each specific person to function was accounted for. We did it. Vic got to have the hotel breakfasts that she loves and Ally got to network and participate in an event that she never thought she would be able to do. (And as a bonus, she won best in runway for her age group, whoop! whoop!).
Almost a year later and that same aide is still with us (although I know that will change very soon, and that will be another huge bump in the road for all of us). But I am not dwelling on that yet. Right now I am just grateful for the experiences having aides that have been able to be there for Vicki when I am not able to be, that have opened up for Ally. We've had other weekends of fashion shows and photoshoots that we've been able to attend because of our aide's availability and dedication to Vicki. And planning. Lots and lots of planning.
Before I get distracted again, I will stop here and talk about Vicki's response to Ally's modeling in Part 3. Love you all. Here's to trying to *time* my posts a bit better. Looks like I will be writing into May. :) Thanks for listening. xoxo
Back to my Part 2. If I can remember where I left off... I was talking about decisions and how 1 decision can affect so many other aspects of your life. BTW, thank you for the sweet, positive comments about Ally and her modeling. It is much appreciated, and the support you show for her as well, we are grateful for.
One of the things I've learned about modeling this last year... it's not just a cute side hobby for Ally. She is very serious about it and treats it very much like the career path she wants to take with it. She's dedicated, professional, and very committed to improving her craft. It's not just "smile, say cheese." There is so much to learn, to study, to promote, to improve upon. She's invested, and she is constantly putting herself out there.
And this is where it gets a little tricky. Those that have followed Vicki's journey for a while, remember that she's always had difficulty with transitions. And back in 2012 (seriously!!! that long ago???) she was also diagnosed with PANDAS. We thought at the time autism was difficult. Autism was a walk in the park compared to the struggles that PANDAS brought. Sorry. I need to take a second. I just feel like I was gut-punched. Thinking that it's been 8 years. 8 years. 8 years since so much more started changing for us. And it's been since 2015 (so, 5 years!!) since I've been able to take Vicki somewhere in the car by myself. Pretty much 5 years now that the only way we can get Vicki in and out of the car is if my husband is there. Do you know how scary that is for me? It's terrifying. When he has to travel for work... there are so many 'what ifs' that seem so far-fetched, but I need to be prepared for them and plan for them. Sorry, I digressed a bit... Squirrel!
Anyway, this all relates to Ally and her modeling. For years, Ally has had to deal with things that a lot of her peers never had to think about... Simple things, like jumping in the car for a spur of the moment trip to the store or out for ice cream. A friend asking Ally to come over and hang out. Soccer practice. A dance at school. Going to a girl scout meeting or an activity. Going to guitar lessons. None of it was easy. And a lot of the times she wouldn't even ask because she knew it would be difficult to plan for and might not be able to go. We've had an amazing support system over the years tho, friends that went above and beyond to make sure Ally was included in things. And I had to finally swallow my pride and ask for help. Some things we were able to keep going with much help, other things people made exceptions for and worked around our home life ( ie.. Ally's guitar teacher came to our house to give her lessons) and some things Ally ended up quitting. If my husband was at work late, and we didn't have an attendant at home for Vicki, there was no way we could leave the house. Period.
So... fast forward to Ally starting to model. One of the things Ally loves about modeling is the social aspect of it. Making connections. Meeting new people. Planning. Rehearsals. The hustle and bustle of long show days where a make-up call time is at 8 am, and the show doesn't start until 6 pm. And, obviously, because Ally is a minor, I need to accompany her everywhere and be there for all of it. That poses some very unique challenges. And that's where I sometimes just stop, and think, how is it possible that people come into our lives just when we need them??
Right about the time Ally started getting booked for fashion shows and photoshoots, she was also given an awesome opportunity to go to Texas for a modeling expo where she could attend seminars, learn from others in the industry, and participate in events and competitions. Gosh, how I wanted her to be able to go and experience all of it. But, we put it out of our minds. I can't take Ally out of our house at all unless I have an aide scheduled and everything is lined up for Vicki. Vicki won't get out of bed unless I get her. So, a week in Texas... there was no way I could be in 2 places at once. Doesn't every parent wish they could at 1 time or another?! As I sadly thought about how difficult it would be logistically to do anything with Ally to foster her love of modeling... I get a text from an aide that used to work with Vicki. Throughout her college years and beyond she was a staple at our house. Even after she moved across the country, she was still a part of our lives. We were thrilled a few years ago when she moved back to VA, and she was able to come and see us from time to time. She had started working with Vicki right around the time Vic was diagnosed with PANDAS, so she's been through a lot with us. Making a long story somewhat short, the timing of her text was pretty much perfect. Over the course of a few months, she had moved back home and was free to work with Vicki. I had joked with her about the timing and how perfect it was and that she needed to road trip with us to Texas to be with Vicki so Ally could attend her modeling event. Vicki was comfortable with her because we've known her for years. And right around that time my husband took a job for a different company and he started working from home. After 18 years of commuting on I95, he was working from home. So he was able to drive us all down to Texas and work out of the hotel room for that week, while our aide and Joe helped with Vicki and I was free to be there for Ally and her events. Now, even with that, every day took massive amounts of planning and the whole team of us to make sure everything that Vicki needed from each specific person to function was accounted for. We did it. Vic got to have the hotel breakfasts that she loves and Ally got to network and participate in an event that she never thought she would be able to do. (And as a bonus, she won best in runway for her age group, whoop! whoop!).
Almost a year later and that same aide is still with us (although I know that will change very soon, and that will be another huge bump in the road for all of us). But I am not dwelling on that yet. Right now I am just grateful for the experiences having aides that have been able to be there for Vicki when I am not able to be, that have opened up for Ally. We've had other weekends of fashion shows and photoshoots that we've been able to attend because of our aide's availability and dedication to Vicki. And planning. Lots and lots of planning.
Before I get distracted again, I will stop here and talk about Vicki's response to Ally's modeling in Part 3. Love you all. Here's to trying to *time* my posts a bit better. Looks like I will be writing into May. :) Thanks for listening. xoxo
Saturday, April 4, 2020
Day 2. Year 2020. Part 1.
Do you ever just look at a snapshot of your life, and think --- every decision,
whether big or small, led me directly here. Right here. Right now. I've been thinking about that a lot lately. We've had a lot of significant changes to our lives in the past few years, and of course like everyone else, the last month as well.
I'm a huge believer that things are put in our path at a very specific time, just when we need a change. Even if, at that specific time, you have no idea how to turn those lemons into lemonade, and you just can't understand why things are happening the way they are. Below is one example.
I know this is a blog about autism, and about Vicki. But it's also a way for me to show how autism has affected our whole family. You will have to forgive me. I can't remember what I made for breakfast this morning, let alone what I posted in this blog a year ago, So, if this is a repeat, feel free to smile and nod and think about your grandparents telling you the same stories over and over again. Those stories must hold some special meaning. And as time goes by, the stories change a bit. Maybe because they couldn't remember exactly what happened anymore, or maybe because the passage of time gives us the gift of reflection and the things that have happened in your life take on new meaning as you understand them and reflect on them. Or you just can't remember. Either way, smile and nod. :)
Almost 2 and a half years ago (wow, that's crazy it's been that long already!) our youngest daughter, Ally, started having some medical issues. At first, she was just feeling dizzy, and then she started fainting at school and ended up having to go to the ER a few times. Then, almost daily, I was having to go pick her up from school because of it. Long story, short... she went through a lot of testing and was eventually diagnosed with POTS (postural orthostatic tachycardia syndrome) and put on medication and changed up her lifestyle (ie... tons more water, salt, frequent breaks, more sleep, more core exercises, etc....) Along the way, she had to finish out her 7th grade school year at home. Then for 8th grade, she had a teacher come to the house for school. And this past school year, for 9th grade, we made the decision to homeschool. It was not an easy decision, but in the end, we all felt like it was the right one for Ally. Fast forward to today. She is thriving. She is completely off her medication for POTS and she knows her body and how to adjust if she has any symptoms. She loves the homeschool model we chose and has had no real disruption to her routine or schooling since the outbreak of this virus, with the exception of her brother and sister now being home too.
When all of Ally's medical issues ramped up, Vicki was also going through a lot: a lot of seizures, a lot of behaviors, and she had broken her leg. So everything was very stressful. I wanted to give Ally a break one day. So, I talked to a friend of mine who is a make-up artist, and we planned a photoshoot for Ally. Something to take her mind off everything that was going on and just get pampered and have a day that was full of fun girly stuff, a day just for her. Think 80's glamour shots, but way cooler, and less hairspray. :) We did the photoshoot. It was absolutely perfect. Everything I wanted for Ally and more.
She came home after that photoshoot, and she was like, 'Oh, my gosh. That was the best day ever! I loved it so much! You know... I wouldn't mind doing that again sometime.' (with a sly little smile playing on her face). And, so began her love of modeling. She hasn't slowed down since. She loves everything about it: from photoshoots to runway shows, to meeting new people and learning more about the industry.
And had Ally not been diagnosed with POTS, which eventually led to the decision to homeschool, we may have never done a photoshoot for her. And she may never have known that modeling is what she is passionate about, what she absolutely loves. But how do we pursue something that requires such a time commitment and a lot of scheduling? With Vicki's transition issues still at the forefront, and Vicki's anxiety ramping up so much, how do we try it? Because for years we've had such difficulty trying to get either Joe or Ally to activities/sports/social gatherings...
Since I'm behind a few days already on my blog posts, let's call this Part 1. Stay tuned for Part 2 (which will discuss how we have managed to get Ally to model calls and shoots and fashion shows in the throws of very difficult medical issues and behaviors with Vicki). And also Part 3, which is really interesting, because I sat down this morning to write this post before I got Vicki up for the day, and some things that went on today with Vicki relate directly to this topic. I thought it was very interesting.
And, because I am a very proud momma, some shameless promotion for Ally:
She has a public modeling page on Instagram @ ally.rosette
and I am super proud of what she is doing. She manages it all on her own and works really hard at creating content that she is proud of. You should head over to her page and see what she posted on World Autism Day this year (she came up with the idea and the post all on her own).
Love to you all. And thanks for coming back this year to read. xoxo
I'm a huge believer that things are put in our path at a very specific time, just when we need a change. Even if, at that specific time, you have no idea how to turn those lemons into lemonade, and you just can't understand why things are happening the way they are. Below is one example.
I know this is a blog about autism, and about Vicki. But it's also a way for me to show how autism has affected our whole family. You will have to forgive me. I can't remember what I made for breakfast this morning, let alone what I posted in this blog a year ago, So, if this is a repeat, feel free to smile and nod and think about your grandparents telling you the same stories over and over again. Those stories must hold some special meaning. And as time goes by, the stories change a bit. Maybe because they couldn't remember exactly what happened anymore, or maybe because the passage of time gives us the gift of reflection and the things that have happened in your life take on new meaning as you understand them and reflect on them. Or you just can't remember. Either way, smile and nod. :)
Almost 2 and a half years ago (wow, that's crazy it's been that long already!) our youngest daughter, Ally, started having some medical issues. At first, she was just feeling dizzy, and then she started fainting at school and ended up having to go to the ER a few times. Then, almost daily, I was having to go pick her up from school because of it. Long story, short... she went through a lot of testing and was eventually diagnosed with POTS (postural orthostatic tachycardia syndrome) and put on medication and changed up her lifestyle (ie... tons more water, salt, frequent breaks, more sleep, more core exercises, etc....) Along the way, she had to finish out her 7th grade school year at home. Then for 8th grade, she had a teacher come to the house for school. And this past school year, for 9th grade, we made the decision to homeschool. It was not an easy decision, but in the end, we all felt like it was the right one for Ally. Fast forward to today. She is thriving. She is completely off her medication for POTS and she knows her body and how to adjust if she has any symptoms. She loves the homeschool model we chose and has had no real disruption to her routine or schooling since the outbreak of this virus, with the exception of her brother and sister now being home too.
When all of Ally's medical issues ramped up, Vicki was also going through a lot: a lot of seizures, a lot of behaviors, and she had broken her leg. So everything was very stressful. I wanted to give Ally a break one day. So, I talked to a friend of mine who is a make-up artist, and we planned a photoshoot for Ally. Something to take her mind off everything that was going on and just get pampered and have a day that was full of fun girly stuff, a day just for her. Think 80's glamour shots, but way cooler, and less hairspray. :) We did the photoshoot. It was absolutely perfect. Everything I wanted for Ally and more.
She came home after that photoshoot, and she was like, 'Oh, my gosh. That was the best day ever! I loved it so much! You know... I wouldn't mind doing that again sometime.' (with a sly little smile playing on her face). And, so began her love of modeling. She hasn't slowed down since. She loves everything about it: from photoshoots to runway shows, to meeting new people and learning more about the industry.
And had Ally not been diagnosed with POTS, which eventually led to the decision to homeschool, we may have never done a photoshoot for her. And she may never have known that modeling is what she is passionate about, what she absolutely loves. But how do we pursue something that requires such a time commitment and a lot of scheduling? With Vicki's transition issues still at the forefront, and Vicki's anxiety ramping up so much, how do we try it? Because for years we've had such difficulty trying to get either Joe or Ally to activities/sports/social gatherings...
Since I'm behind a few days already on my blog posts, let's call this Part 1. Stay tuned for Part 2 (which will discuss how we have managed to get Ally to model calls and shoots and fashion shows in the throws of very difficult medical issues and behaviors with Vicki). And also Part 3, which is really interesting, because I sat down this morning to write this post before I got Vicki up for the day, and some things that went on today with Vicki relate directly to this topic. I thought it was very interesting.
And, because I am a very proud momma, some shameless promotion for Ally:
She has a public modeling page on Instagram @ ally.rosette
and I am super proud of what she is doing. She manages it all on her own and works really hard at creating content that she is proud of. You should head over to her page and see what she posted on World Autism Day this year (she came up with the idea and the post all on her own).
Love to you all. And thanks for coming back this year to read. xoxo
Wednesday, April 1, 2020
Day 1. Year 2020.
Well. Hello April.
I've been back and forth on whether or not I should write this year. Clearly, as I look back on last year, and the year before, and the year before that... I don't seem to follow through with things. My last post last year was something to the effect of "I've only written for 15/30 days of April, but I really want to finish something, so I'm going to keep writing in May to finish up 30 days." Yeah, that was my last post. That clearly didn't happen. And that got me thinking about what to write about today.
First off, I wanted to say that I hope all of you are in good health and are making your way in this unprecedented time in this world with hope, love, and lots and lots of patience. I've been very overwhelmed, as I'm sure many of you are, with all of the changes, and scary reports, and closures. I've had to step away from the news and social media platforms because it gets to be so much. Too much. So I debated about posting during this time. But then I thought, why not. Maybe writing a bit will help me and who knows, maybe something I say will connect with you as well. And in these times we desperately need connections.
And there it is. Connection. Interaction. Socialization.
We've all seen what happens when that's taken away now. How we feel. The isolation.
And that makes me think of Vicki. And so many other children with autism.
Not just Vicki this last month. But Vicki's whole life.
Lack of connections. Lack of interaction. Lack of socialization. Isolation.
Wow.
How does it make you feel? And think about it. You want to go out, you want to see people, you want to interact. You just can't. And what if you couldn't talk about that with anyone? What if you didn't have the language skills to explain how you are feeling? In a very strange way, this whole world has been given a quasi-autism diagnosis. Not really, but look at the similarities.
And now some of us are given a gift of more time with family. What do we do with this time? Everyone's schedules are interrupted. (And for Vicki, and I'm sure a lot of kids and adults alike, it has been very hard to explain and a very difficult transition.) Now that our schedule has been wiped clean for the next 2 plus months, what do we do with this gift of time?
What do we prioritize? I have found myself saying more and more the last few years... I just don't have time to _____. There is never enough time to finish ______. To focus on _______. To write that letter. To reach out to _____. To call ______. To do that blog post. ;) Time has gone by too fast with the kids. As Vicki approaches her 18th birthday next month, it has hit me very, very hard. I want more time. And now I have it. I want to use it wisely.
Speaking of time, I need to run. If I don't get Vicki up in the morning and shower with her, she honestly wouldn't get up. I know it sounds kind of funny.... who wants to get up in the morning? But honestly, it's very overwhelming and scary for me. If I don't do it, she won't get up. Seriously. And that scares the crap out of me.
Thanks for coming back this year and reading! And for those of you who are new, feel free to take a look back at previous years. Love you all. xoxo
First off, I wanted to say that I hope all of you are in good health and are making your way in this unprecedented time in this world with hope, love, and lots and lots of patience. I've been very overwhelmed, as I'm sure many of you are, with all of the changes, and scary reports, and closures. I've had to step away from the news and social media platforms because it gets to be so much. Too much. So I debated about posting during this time. But then I thought, why not. Maybe writing a bit will help me and who knows, maybe something I say will connect with you as well. And in these times we desperately need connections.
And there it is. Connection. Interaction. Socialization.
We've all seen what happens when that's taken away now. How we feel. The isolation.
And that makes me think of Vicki. And so many other children with autism.
Not just Vicki this last month. But Vicki's whole life.
Lack of connections. Lack of interaction. Lack of socialization. Isolation.
Wow.
How does it make you feel? And think about it. You want to go out, you want to see people, you want to interact. You just can't. And what if you couldn't talk about that with anyone? What if you didn't have the language skills to explain how you are feeling? In a very strange way, this whole world has been given a quasi-autism diagnosis. Not really, but look at the similarities.
And now some of us are given a gift of more time with family. What do we do with this time? Everyone's schedules are interrupted. (And for Vicki, and I'm sure a lot of kids and adults alike, it has been very hard to explain and a very difficult transition.) Now that our schedule has been wiped clean for the next 2 plus months, what do we do with this gift of time?
What do we prioritize? I have found myself saying more and more the last few years... I just don't have time to _____. There is never enough time to finish ______. To focus on _______. To write that letter. To reach out to _____. To call ______. To do that blog post. ;) Time has gone by too fast with the kids. As Vicki approaches her 18th birthday next month, it has hit me very, very hard. I want more time. And now I have it. I want to use it wisely.
Speaking of time, I need to run. If I don't get Vicki up in the morning and shower with her, she honestly wouldn't get up. I know it sounds kind of funny.... who wants to get up in the morning? But honestly, it's very overwhelming and scary for me. If I don't do it, she won't get up. Seriously. And that scares the crap out of me.
Thanks for coming back this year and reading! And for those of you who are new, feel free to take a look back at previous years. Love you all. xoxo
Tuesday, April 30, 2019
Day 15. Year 2019
Well, today is April 30, the last day of autism awareness month. And today is the 15th post I've made this month. Half of the 30 I had wanted to write. That's not too bad. I have to say I'm enjoying writing again and am not really ready to stop. Since autism never stops in our house, if you are game, I'd like to finish my "30 days" this year. If you don't mind reading more of my dribble in the month of May, I figure that I can get the other 15 days done by the end of May. Pretty decent goal for me. And a pretty busy month ahead, so plenty of stuff to write about.
Maybe this year I just really need to 'finish' something. You know? And in my mind, if I 'finish' 30 days of writing, I will have accomplished something. At the beginning of April, I talked about how I love puzzles and maybe one of the reasons is because it gives me such satisfaction to complete one. Same thing here. Not that I am ever done talking. {ha} But it's something. And with all of the uncertainty and unanswered questions, circling around and around again, figuratively chasing our tails to help Vicki, it helps me. With all of the tests recently {the upper endoscopy and colonoscopy}, it's beyond frustrating to me that we still really have no answers. And that's hard for me to swallow.
Some days it just hits me like a tidal wave. I'm always thinking about goals for Vicki, and what we need to focus on. And what I would do to be able to talk to Vicki about her own goals, and what she wants to focus on. Every time I think about that, I get a lump in my throat. Sometimes I just crave reassurance so much, from Vicki. Reassurance from her that I am advocating for her what she needs. That I am focusing on her goals. That I am thinking about what she wants and desires in life.
Vicki was crying last night. Quite a bit. And it rips my heart out every time. The sheer pain in her eyes. Is it physical pain? Is it sadness? Is it loneliness? God, I want to know. And I also don't want to know. You know?
I know that I sound like a broken record. But all I want for her is to be happy. To enjoy life. To feel loved. To feel safe. Isn't that what we all want? And I know it's not an easy task. Everyone climbs their own mountains every day.
Some days, though, I know Vicki is telling me things. She might squeeze my hand a little harder. She might let out a pelt of laughter and even though I don't know what's funny, I join in. Because her laughter is music to my soul. Every night when I tuck her in, she says, "Momma, wrap it around burrito." So, I tuck her in tight and give her a big squeeze. At that moment, I know she feels safe. And then there are moments when she looks at me. Like, really, looks at me. And I know this is stupid, but I have tears streaming down my face right now as I am thinking about those moments. She says more to me in those moments with her eyes that I could fill up on paper, that I could fill up with verbal conversations. I know it may sound corny. But she is telling me so much in the gaze, I never want to look away. It gives me goosebumps. It gives me hope. And it gives me peace. And it helps me to get up every day and climb my own mountain. Much love to you all. xoxo
Maybe this year I just really need to 'finish' something. You know? And in my mind, if I 'finish' 30 days of writing, I will have accomplished something. At the beginning of April, I talked about how I love puzzles and maybe one of the reasons is because it gives me such satisfaction to complete one. Same thing here. Not that I am ever done talking. {ha} But it's something. And with all of the uncertainty and unanswered questions, circling around and around again, figuratively chasing our tails to help Vicki, it helps me. With all of the tests recently {the upper endoscopy and colonoscopy}, it's beyond frustrating to me that we still really have no answers. And that's hard for me to swallow.
Some days it just hits me like a tidal wave. I'm always thinking about goals for Vicki, and what we need to focus on. And what I would do to be able to talk to Vicki about her own goals, and what she wants to focus on. Every time I think about that, I get a lump in my throat. Sometimes I just crave reassurance so much, from Vicki. Reassurance from her that I am advocating for her what she needs. That I am focusing on her goals. That I am thinking about what she wants and desires in life.
Vicki was crying last night. Quite a bit. And it rips my heart out every time. The sheer pain in her eyes. Is it physical pain? Is it sadness? Is it loneliness? God, I want to know. And I also don't want to know. You know?
I know that I sound like a broken record. But all I want for her is to be happy. To enjoy life. To feel loved. To feel safe. Isn't that what we all want? And I know it's not an easy task. Everyone climbs their own mountains every day.
Some days, though, I know Vicki is telling me things. She might squeeze my hand a little harder. She might let out a pelt of laughter and even though I don't know what's funny, I join in. Because her laughter is music to my soul. Every night when I tuck her in, she says, "Momma, wrap it around burrito." So, I tuck her in tight and give her a big squeeze. At that moment, I know she feels safe. And then there are moments when she looks at me. Like, really, looks at me. And I know this is stupid, but I have tears streaming down my face right now as I am thinking about those moments. She says more to me in those moments with her eyes that I could fill up on paper, that I could fill up with verbal conversations. I know it may sound corny. But she is telling me so much in the gaze, I never want to look away. It gives me goosebumps. It gives me hope. And it gives me peace. And it helps me to get up every day and climb my own mountain. Much love to you all. xoxo
Monday, April 29, 2019
Day 14. Year 2019
So, yeah, I started this post Friday morning. Better late than never, right? :) Hope you all had a great weekend, it was beautiful weather here in VA all weekend long. We were able to spend quite a bit of time outside, and I am so grateful for that. It's the little things that I used to take for granted that mean so much to me now. Like just going outside. It's not just transitioning to and from the car that is difficult for Vicki, it's pretty much every transition she has. Every time she goes from laying down to sitting up, from sitting up to standing up, from standing up to sitting down..... you get the picture. Every one of those moments is difficult for Vicki. You can see her struggling. Something as seemingly simple as saying "Let's go outside" can become an hour long fight to stand up and go outside. And then another fight to stay outside for 5 minutes. Some days we just don't have it in us to pick that fight, and it's easier to not ask at all. That makes me sad. But it's the truth.
Anyway, enough of the sad talk, this weekend we had some small victories with Vicki. So I am celebrating them. Vicki likes 'campfires' because she knows that she usually gets a yummy s'more at the end of the campfire. We were doing some spring yard cleanup and built a fire to burn the thousands of sticks we had. We were able to get Vicki to pick up a few sticks, 2 different times. She struggles with it, it takes a really long time, and it's hard for her to stop and start moving at times, but she did it. The rest of the day she spent sitting by the campfire watching YouTube Tasty videos on my phone. But, she was outside. And that meant we could all be outside. And that was amazing. She enjoyed chicken and homemade sweet potato chips charred in the fire, and of course, we had a few s'mores. We improvised a bit, I had no graham crackers, so we used girl scout samoa cookies as the sandwich portion with gooey marshmallow inside. Neither Vicki nor I was upset about the change. :) Ideally, someday I would like for Vicki to be able to remain outside and be reinforced enough just with family conversations. But this weekend, it was a wonderful start. Both Mark and I got to be outside together. And that was great. And Vicki smiled a few times and got to enjoy the fresh air. And that was great. And Ally got to pick up the thousand sticks minus the 2 stacks Vicki got. And that was really great.
Ok, so back to my post that I started on Friday: Let's talk about poop. Again.
One of the things I love about Vicki's GI doctor is that he does what he says he's going to do, and always in a timely fashion. And he has a wonderful bedside manner. In this world of technology and automated information and impersonal interactions, it's so refreshing. He likes to do things himself. He always calls me directly with results. It's never his nurse or his secretary. He always returns my phone calls. And he really appreciates the pictures I take, and the charts I make for him. He's easy to talk to and he's funny. Okay, enough of me singing the GI's praises... but sometimes it's so good to say something positive about someone. I do enough of complaining, Anyway, he said some of the biopsy results should be back by Friday, and sure enough, he called Thursday night around 7:30 to discuss them.
I wish I could be as positive about the results as I am about the doctor. It sounds awful... it's not like I was hoping for Vicki to have Crohn's Disease or that they would find something blatantly wrong. But I was hoping for answers. And, unfortunately, we struck out again. Well, not totally. Kind of ruling out things is good, but there isn't a whole lot left to question... One of the things we did discover is that Vicki's reflux is getting worse. Neither of us realized that. Apparently, the juncture where the esophagus meets the stomach is showing worsening of the reflux. We are going to switch her reflux medicine and see if that will help slow down, relieve, or improve the reflux. It's hard because we don't know how Vicki feels.
The GI was a little worried that Vicki might have eosinophil esophagitis. But biopsies showed no sign of that. So that's good. And as far as the colonoscopy, so far all of the tests/biopsies have come back normal. No evidence of inflammatory bowel disease, no evidence of celiac disease, no evidence of Crohn's disease, no evidence of ulcerative colitis, no candida, no fungus, no parasites. Enzymes that break down stuff are normal. The large intestine does have an increased number of lymphocytes, but we don't know the reason. And the one test that came back high before is still pending. So, what does this tell us? Not a whole lot. Vicki is still having issues with her poop. And we still are no closer to finding out why and how to help her. She is continuing to take her lactulose for constipation. And we will wait and see how things go over the next two weeks and how that 1 test comes back. The GI said there is a possibility that the Crohn's disease is hiding out in the section of bowel that they can't reach. If he ends up looking at that, that's a whole different kind of test, and it doesn't sound great. So we will wait on that. So, for now, things are still pretty shitty. The end.
I am going to go now and post this before I get busy again. Much love to you all. xoxo
Anyway, enough of the sad talk, this weekend we had some small victories with Vicki. So I am celebrating them. Vicki likes 'campfires' because she knows that she usually gets a yummy s'more at the end of the campfire. We were doing some spring yard cleanup and built a fire to burn the thousands of sticks we had. We were able to get Vicki to pick up a few sticks, 2 different times. She struggles with it, it takes a really long time, and it's hard for her to stop and start moving at times, but she did it. The rest of the day she spent sitting by the campfire watching YouTube Tasty videos on my phone. But, she was outside. And that meant we could all be outside. And that was amazing. She enjoyed chicken and homemade sweet potato chips charred in the fire, and of course, we had a few s'mores. We improvised a bit, I had no graham crackers, so we used girl scout samoa cookies as the sandwich portion with gooey marshmallow inside. Neither Vicki nor I was upset about the change. :) Ideally, someday I would like for Vicki to be able to remain outside and be reinforced enough just with family conversations. But this weekend, it was a wonderful start. Both Mark and I got to be outside together. And that was great. And Vicki smiled a few times and got to enjoy the fresh air. And that was great. And Ally got to pick up the thousand sticks minus the 2 stacks Vicki got. And that was really great.
Ok, so back to my post that I started on Friday: Let's talk about poop. Again.
One of the things I love about Vicki's GI doctor is that he does what he says he's going to do, and always in a timely fashion. And he has a wonderful bedside manner. In this world of technology and automated information and impersonal interactions, it's so refreshing. He likes to do things himself. He always calls me directly with results. It's never his nurse or his secretary. He always returns my phone calls. And he really appreciates the pictures I take, and the charts I make for him. He's easy to talk to and he's funny. Okay, enough of me singing the GI's praises... but sometimes it's so good to say something positive about someone. I do enough of complaining, Anyway, he said some of the biopsy results should be back by Friday, and sure enough, he called Thursday night around 7:30 to discuss them.
I wish I could be as positive about the results as I am about the doctor. It sounds awful... it's not like I was hoping for Vicki to have Crohn's Disease or that they would find something blatantly wrong. But I was hoping for answers. And, unfortunately, we struck out again. Well, not totally. Kind of ruling out things is good, but there isn't a whole lot left to question... One of the things we did discover is that Vicki's reflux is getting worse. Neither of us realized that. Apparently, the juncture where the esophagus meets the stomach is showing worsening of the reflux. We are going to switch her reflux medicine and see if that will help slow down, relieve, or improve the reflux. It's hard because we don't know how Vicki feels.
The GI was a little worried that Vicki might have eosinophil esophagitis. But biopsies showed no sign of that. So that's good. And as far as the colonoscopy, so far all of the tests/biopsies have come back normal. No evidence of inflammatory bowel disease, no evidence of celiac disease, no evidence of Crohn's disease, no evidence of ulcerative colitis, no candida, no fungus, no parasites. Enzymes that break down stuff are normal. The large intestine does have an increased number of lymphocytes, but we don't know the reason. And the one test that came back high before is still pending. So, what does this tell us? Not a whole lot. Vicki is still having issues with her poop. And we still are no closer to finding out why and how to help her. She is continuing to take her lactulose for constipation. And we will wait and see how things go over the next two weeks and how that 1 test comes back. The GI said there is a possibility that the Crohn's disease is hiding out in the section of bowel that they can't reach. If he ends up looking at that, that's a whole different kind of test, and it doesn't sound great. So we will wait on that. So, for now, things are still pretty shitty. The end.
I am going to go now and post this before I get busy again. Much love to you all. xoxo
Thursday, April 25, 2019
Day 13. Year 2019
I wanted to start off today's post with some positive news. Remember when I was talking about Vicki getting off the bus in the afternoon from school? And how last week {I thought/hoped} that because of a change in bus aides Vicki was struggling again and not getting off the bus? I was praying that was the case, and I think it was! When her regular bus aide came back to work on Tuesday, I held my breath for a second, and Vicki only hesitated for about 5 seconds then got up and off the bus. Phew!!!! Hopefully, that was indeed the issue, and because her routine was re-established it extinguished the behavior. Not that that is good for the future, because it's so important for her to learn to manage change and be able to push through it, but for now, for this moment, I let out a little sigh of relief. The crazy thing is... a 5-10 second hesitation with Vicki can feel like forever. Like I am caught in suspended animation. That hesitation could go either way. It could be nothing, or it could be that we are hunkered down for a long wait for her to transition. My family was obsessed with the TV show Psych. And waiting for Vicki to stand up reminds me of one of Shawn and Gus's catchphrases. I've heard it both ways. Yep. I have definitely seen Vicki's transitions go both ways. It could be nothing but a slight hesitation, or it could be hours on end. Luckily it went the first way this week.
I said that I wanted to talk about Vicki's and Ally's relationship a bit more. Don't you find it fascinating, to see the changes in sibling relationships and interactions over the years? It's especially fascinating to me to see how theirs has ebbed and flowed over the years. Relationships take work. On both parties parts. And with autism, it's very difficult for Vicki to establish certain relationships. One of the hardest things for me to talk about is relationships. Vicki nurtures and fosters her relationships just like anybody else would do, but it's different. But also the same. I absolutely hate answering social questions about friendships. Does Vicki have friends? Absolutely I know that Vicki has friends. And that she develops those relationships in her own way, to suit her needs. What is a friend? That's such an interesting question to me. How do you define your friendships? What does it mean to have a best friend? To have acquaintances? To see that changes in friends and relationships over the years. I could write so much about this. But I won't. I need to focus. Anyway, One thing that saddens me is that Vicki has never, and may never, ask to have a friend over. She has never been to a sleepover or had a friend sleepover here. She was in a "playgroup" when she was a baby, but did she ever ask for so-and-so to come over and play? No. If I write too much about this, I will start to cry. So I will leave it there. I just know that God knew exactly what our family needed. And he gave us Ally. He gave Joey Ally. He gave Vicki Ally. And yes, I believe that Ally is Vicki's best friend.
Vicki and Ally have a 3 year age difference between them. Vicki is Ally's big sister. Ally is Vicki's little sister. I am an only child, so I know nothing from personal experience about sibling interaction. I do know, however, that Vicki and Ally's relationship doesn't follow the 'norm'. But who cares. What I care about is how these 2 can get what they need from each other.
Ally was born right after Vicki was formally diagnosed with autism. At that time, Vicki was quite the escape artist, and in order for me to be able to nurse Ally, Mark had to build a half wall with a heavy pocket door with a lock at the entrance to the living room. All of the regular baby gates were child's play for Vicki. She could Houdini over any of them. Thankfully the door worked, at least for a while, so that I could keep an eye on Vicki and nurse Ally at the same time. Anyway, in the early years, {well, actually, it wasn't just the early years, it's been over all the years, but was definitely most prominent when Ally was younger} Vicki would push Ally down. Yes, I've heard that 'normal' siblings do this, but it was really hard with Vicki and Ally. Vicki would push Ally over as she was learning to walk. And, of course, Ally would cry. And Vicki would laugh. {Again, I'm sure this happens with other siblings, but, it was different with them}. Any time Vicki was around Ally and close to Ally, I was on edge. Especially if Vicki was 'off'' more than usual. More times than not if she reached out for Ally, it was to push her down. How does that foster a developing relationship at such a young age? Ally didn't understand why Vicki was pushing her down all the time. All Ally knew was that it hurt, and she was sad. And she couldn't play with her sister like she wanted to. And from a young age, Ally would try so hard to not cry, because that reaction always spurred further reactions from Vicki. And when you are hurting and your sister is laughing, how do you come to terms with that? Let me tell you, as an adult, I still have trouble with that.
Over the years, when Vicki would draw pictures of our family, Daddy and Mommy would always be super tall sticks, Vicki and Joey would be about the same medium size, and Ally was always a baby, crawling on the floor. Even when Ally started to grow up and get much taller, she was still the baby crawling on the floor in Vicki's eyes. {Heck, in my momma's eyes too!}.
Ally started getting older and wanted to play more. Joey and his dinosaurs were always close by to fill in for the pretend play that Ally sought out from Vicki, but was never really able to get. Oh we fostered parallel play, and we did have moments where they would all do something together, and I held onto those moments with everything I had. And I'm sure Joey and Ally did too. Things were very different though. And yes, I grieve for the moments that the girls never got together, but we celebrated the moments they did get. The little sister, as she was learning to read, tried to teach the big sister to read. And when I watch those moments, it's both heartbreaking and beautiful at the same time.
I have way more to say but want to get this posted now so I will finish up tomorrow. I will leave you with one of the birthday gifts Vicki gave to Ally this year. She colored a picture of the sisters Anna and Elsa from Frozen, and I had her give it to Ally as her birthday card. I wanted to have Vicki write on it, something like 'Happy Birthday to the best little sister in the world', but we haven't done that yet. Vicki has had more difficulty writing lately, and I want to catch her when she's not frustrated. Ally loved the picture. So, today I will leave you with a lyric clip from Frozen. And yes, I cried as I typed this thinking of Ally singing this to Vicki:
Do you wanna build a snowman?
Come on let's go and play.
I never see you anymore, come out the door
It's like you've gone away.
Vicki, please.
I know you're in there.
People are asking where you've been.
They say have courage and I'm trying to
I'm right out here for you, just let me in.
Much love to you. As always, thank you for reading. xoxo
I said that I wanted to talk about Vicki's and Ally's relationship a bit more. Don't you find it fascinating, to see the changes in sibling relationships and interactions over the years? It's especially fascinating to me to see how theirs has ebbed and flowed over the years. Relationships take work. On both parties parts. And with autism, it's very difficult for Vicki to establish certain relationships. One of the hardest things for me to talk about is relationships. Vicki nurtures and fosters her relationships just like anybody else would do, but it's different. But also the same. I absolutely hate answering social questions about friendships. Does Vicki have friends? Absolutely I know that Vicki has friends. And that she develops those relationships in her own way, to suit her needs. What is a friend? That's such an interesting question to me. How do you define your friendships? What does it mean to have a best friend? To have acquaintances? To see that changes in friends and relationships over the years. I could write so much about this. But I won't. I need to focus. Anyway, One thing that saddens me is that Vicki has never, and may never, ask to have a friend over. She has never been to a sleepover or had a friend sleepover here. She was in a "playgroup" when she was a baby, but did she ever ask for so-and-so to come over and play? No. If I write too much about this, I will start to cry. So I will leave it there. I just know that God knew exactly what our family needed. And he gave us Ally. He gave Joey Ally. He gave Vicki Ally. And yes, I believe that Ally is Vicki's best friend.
Vicki and Ally have a 3 year age difference between them. Vicki is Ally's big sister. Ally is Vicki's little sister. I am an only child, so I know nothing from personal experience about sibling interaction. I do know, however, that Vicki and Ally's relationship doesn't follow the 'norm'. But who cares. What I care about is how these 2 can get what they need from each other.
Ally was born right after Vicki was formally diagnosed with autism. At that time, Vicki was quite the escape artist, and in order for me to be able to nurse Ally, Mark had to build a half wall with a heavy pocket door with a lock at the entrance to the living room. All of the regular baby gates were child's play for Vicki. She could Houdini over any of them. Thankfully the door worked, at least for a while, so that I could keep an eye on Vicki and nurse Ally at the same time. Anyway, in the early years, {well, actually, it wasn't just the early years, it's been over all the years, but was definitely most prominent when Ally was younger} Vicki would push Ally down. Yes, I've heard that 'normal' siblings do this, but it was really hard with Vicki and Ally. Vicki would push Ally over as she was learning to walk. And, of course, Ally would cry. And Vicki would laugh. {Again, I'm sure this happens with other siblings, but, it was different with them}. Any time Vicki was around Ally and close to Ally, I was on edge. Especially if Vicki was 'off'' more than usual. More times than not if she reached out for Ally, it was to push her down. How does that foster a developing relationship at such a young age? Ally didn't understand why Vicki was pushing her down all the time. All Ally knew was that it hurt, and she was sad. And she couldn't play with her sister like she wanted to. And from a young age, Ally would try so hard to not cry, because that reaction always spurred further reactions from Vicki. And when you are hurting and your sister is laughing, how do you come to terms with that? Let me tell you, as an adult, I still have trouble with that.
Over the years, when Vicki would draw pictures of our family, Daddy and Mommy would always be super tall sticks, Vicki and Joey would be about the same medium size, and Ally was always a baby, crawling on the floor. Even when Ally started to grow up and get much taller, she was still the baby crawling on the floor in Vicki's eyes. {Heck, in my momma's eyes too!}.
Ally started getting older and wanted to play more. Joey and his dinosaurs were always close by to fill in for the pretend play that Ally sought out from Vicki, but was never really able to get. Oh we fostered parallel play, and we did have moments where they would all do something together, and I held onto those moments with everything I had. And I'm sure Joey and Ally did too. Things were very different though. And yes, I grieve for the moments that the girls never got together, but we celebrated the moments they did get. The little sister, as she was learning to read, tried to teach the big sister to read. And when I watch those moments, it's both heartbreaking and beautiful at the same time.
I have way more to say but want to get this posted now so I will finish up tomorrow. I will leave you with one of the birthday gifts Vicki gave to Ally this year. She colored a picture of the sisters Anna and Elsa from Frozen, and I had her give it to Ally as her birthday card. I wanted to have Vicki write on it, something like 'Happy Birthday to the best little sister in the world', but we haven't done that yet. Vicki has had more difficulty writing lately, and I want to catch her when she's not frustrated. Ally loved the picture. So, today I will leave you with a lyric clip from Frozen. And yes, I cried as I typed this thinking of Ally singing this to Vicki:
Do you wanna build a snowman?
Come on let's go and play.
I never see you anymore, come out the door
It's like you've gone away.
Vicki, please.
I know you're in there.
People are asking where you've been.
They say have courage and I'm trying to
I'm right out here for you, just let me in.
Much love to you. As always, thank you for reading. xoxo
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