Welcome back to my little personal blog space! It's been over 3 years since I've logged into this page and it took me about 10 minutes to remember my password and where to go to start writing. Suffice to say, I'm a bit rusty. I just felt this little tug at my heart this year, pulling me back into writing about Vicki, about autism, about life, and about me and my feelings. If I am completely honest, it's mostly about the latter this year. So much has happened since I last logged on. Some good, some bad, some heartbreaking and sad. (see, I still love rhyming.) For those of you who never read my blog, welcome! I have to warn you... I write like I talk, and my grammar isn't perfect. And I really try to write from the heart.
I hope that by writing again this month, it will help me sort out the jumble of worries that I always seem to carry around. I also hope that it will re-acquaint you with Vicki and with our family. I haven't been the best at relaying information these last few years, mainly because when someone kindly asks how things are going, I just smile and nod, and say it's going. Or I ignore the question and deflect to something else. Some days it is too hard for me to admit how things are going; it makes me feel ungrateful for the positives when I just complain about the negatives. So, to all of you who love following Vicki's progress, I apologize for the lapse. Vicki has changed quite a bit the last few years, but underneath she is still the little girl with beautiful curls who loves music and coloring and food. When I get a true unfiltered Vicki smile, it lights my heart aglow and keeps me pushing forward.
Vicki is 16 now and will be turning 17 next month. Boy, is that hard for me to write. Time just keeps marching forward whether we are ready or not. NOT! I still see that little 4 year old with braids who would carry her little Elmo around everywhere she went. Now she's 16, gave up the braids and lets her curly hair down, and carries around her beloved Layse Black Cat. She also has 2 other new additions to her animal zoo. She has Fox, who goes upstairs to sleep with her and Layse Black Cat every night. And Sloth, who Joe (see how time marches on?? It's Joe now, not Joey. And he's finishing up his first year of college... more to come on that another day) got for her for Christmas this year. Sloth only goes in the van with us. So to recap, Layse Black Cat does everything with Vic, and even goes to school with her. Fox only sleeps at night with her and Layse. And Sloth joins the 2 of them in the van to give her extra support there. Oh yeah, and she has her very own live action Layse Black Cat in her puppy Skipper. More to come on their relationship later, but suffice to say, Skipper is everything we could have asked for in a companion for Vicki and more. He will be 4 this August and he is pretty darn awesome.
I tried to keep this post light and vague, to get my fingers used to typing again, and to get my feet wet again with sharing. It may take me a few minutes to publish this, so I'm going to sign off for now so I can actually post today. I have to get Vic up in a few minutes for school. I think she only slept about an hour last night, so it may be a tricky one today. Again, more on her sleep to come.
I'm happy to be here again, and I hope you all enjoy reading this month. Love you all. xo
Monday, April 1, 2019
Saturday, April 30, 2016
Day 11. Year 6.
11/30 days writing for the month of April. 37 %. (And, yes, I needed a calculator to do that math. Ha.) Eh. Not my best showing. Don't worry though.... I will keep writing for a while yet... please keep checking back. I may be able to get the rest done in May. ;)
I shared an article on my facebook page the other day. It was from a site called The Caregiver Network. It actually struck quite a chord with me. It's no secret that I've been struggling a lot this past year. The last thing I want to do is 'burn-out'. I have a lifetime of care-giving ahead of me. I can't burn out now.
I guess I'm writing about this tonight because I was thinking about it a lot today. I know I sound like a broken record... but this past year has done quite the number on me, on Vicki, on my husband, and on Joe and Ally. You never realize how fortunate you are -- being about to get in a vehicle and go for a drive, go do things, interact with the world. Until you can't anymore. We've always done things as a family. It wasn't always easy and things didn't always go well, but we kept trying.
And I think that's one of the things that makes me sad. I feel like I've stopped trying. Like tonight... it's been a really long week with both Ally and Joe having had the flu. Sometimes I feel like the walls are smothering me. And tonight my husband kind of suggested we all get in the car and drive down to Costco since the kids were feeling better. (And in a way, that sounded heavenly.) But then we exchanged looks with each other, and quietly decided not to try that. And it broke my heart. But it's easier not to try. One big reason is for safety. And that's something we are constantly aware of. At what cost do we put Vicki through trying to get in a vehicle? We worry both about the safety of Vicki and the safety of my husband as she is fighting. And then IF we were to get her in... then what? I would sit in the car with her while my husband and other kids went into Costco. And then we would have to struggle again to get her out of the van at home. And who knows how long those transitions would actually take. So it's easier to not try.
I've seen such a change in me too. It's easier to just keep my sweats and old t-shirt on and not bother trying to fix myself up and make myself 'presentable'. Sad. I know. It takes everything I have sometimes to do that.
Even though sometimes I feel like the walls of our house are closing in on me... it's an odd sort of comfort. I'm safe here. I'm used to it here. It's easier here. It takes everything I have to actually agree to go meet someone for a cup of coffee and girl talk when Vicki is at school. And that's the only time I can get away. And even then, it's easier not to. And I know that's dangerous.
About a month ago or so, I was able to take Ally to a function at school for about an hour one evening. It had been quite a while since I had done that. It was hard. I'm not quite sure how to describe it. Again, the author, Zachary White, from the article I read entitled "Inside Out" summed it up pretty good:
I shared an article on my facebook page the other day. It was from a site called The Caregiver Network. It actually struck quite a chord with me. It's no secret that I've been struggling a lot this past year. The last thing I want to do is 'burn-out'. I have a lifetime of care-giving ahead of me. I can't burn out now.
I guess I'm writing about this tonight because I was thinking about it a lot today. I know I sound like a broken record... but this past year has done quite the number on me, on Vicki, on my husband, and on Joe and Ally. You never realize how fortunate you are -- being about to get in a vehicle and go for a drive, go do things, interact with the world. Until you can't anymore. We've always done things as a family. It wasn't always easy and things didn't always go well, but we kept trying.
And I think that's one of the things that makes me sad. I feel like I've stopped trying. Like tonight... it's been a really long week with both Ally and Joe having had the flu. Sometimes I feel like the walls are smothering me. And tonight my husband kind of suggested we all get in the car and drive down to Costco since the kids were feeling better. (And in a way, that sounded heavenly.) But then we exchanged looks with each other, and quietly decided not to try that. And it broke my heart. But it's easier not to try. One big reason is for safety. And that's something we are constantly aware of. At what cost do we put Vicki through trying to get in a vehicle? We worry both about the safety of Vicki and the safety of my husband as she is fighting. And then IF we were to get her in... then what? I would sit in the car with her while my husband and other kids went into Costco. And then we would have to struggle again to get her out of the van at home. And who knows how long those transitions would actually take. So it's easier to not try.
I've seen such a change in me too. It's easier to just keep my sweats and old t-shirt on and not bother trying to fix myself up and make myself 'presentable'. Sad. I know. It takes everything I have sometimes to do that.
Even though sometimes I feel like the walls of our house are closing in on me... it's an odd sort of comfort. I'm safe here. I'm used to it here. It's easier here. It takes everything I have to actually agree to go meet someone for a cup of coffee and girl talk when Vicki is at school. And that's the only time I can get away. And even then, it's easier not to. And I know that's dangerous.
About a month ago or so, I was able to take Ally to a function at school for about an hour one evening. It had been quite a while since I had done that. It was hard. I'm not quite sure how to describe it. Again, the author, Zachary White, from the article I read entitled "Inside Out" summed it up pretty good:
I watched others. They lived their lives.
I overheard their conversations. They talked of upcoming holidays and family reunions.
The more removed from others we feel, the more reasons we find to stay away from others.
The more we feel separated from others, the more reasons we find not to get out of the house and spend time with others.
The more removed you feel from others, the more strange it feels to be in the company of others.
I didn’t want to fake it anymore.
So there I was, out in the world. And I had so much trouble. I plastered a fake smile on my face and when acquaintances I knew asked me how Vicki was doing... I would pause. Do they really want to know? Or do they feel awkward around me to and it's just something to fill the air? Do I smile and lie? Or do I tell the truth? Most of the time I would say, 'She's struggling. But we are working through it.' But sometimes what I really wanted to say was: 'It's so hard. It's so hard on our whole family. We can't go anywhere anymore. No doctors know how to help her. We've had to stop everything she used to love and do. I can't even pick my other kids up from practices anymore.'
So, I sat down in the corner and watched Ally interact and have a good time. I texted my husband and I texted my friend who stays up with me until 2 in the morning and knows and understands how hard this is. How hard it is to go out and try to be 'normal'. I just wanted to run back to the safety of my house and my walls and my little family and shut the door. And text my friend in the middle of the night crying.
Sheesh. This sounds so horrible. Don't worry. I am a fighter. I find ways to mend my spirit so that I can continue to be strong for Vicki and for my family. But sometimes, like tonight, I like to be as honest as I can be. We all have struggles. We are all care-givers to someone, in someway. We all need to take a moment and regroup and recharge. It's not easy, but I find my ways. I hope you do too. No one has to be truely alone in this world. In some little way, I hope my blog helps someone out there, just a little bit. To know that even though our circumstances are all different. I am here for you, just as you all are here for me. xoxo
Day 10. Year 6.
I thought I would share with you tonight the kinds of twists and turns my mind takes on a daily basis, especially after reacting to local news happenings. This world we live in is a scary place. The point of my post is not to dwell on this or discuss politics or anything of that nature. It is simply a starting point to discuss one of my deepest fears.
Today there was another bomb threat at a local middle school in our county. Luckily, the building was cleared and all of the students/staff/responders were safe at the end of the day based on the reports that I saw. This has been happening with much more frequency, it seems. This school is in lock-down, that school is being evacuated. It's scary stuff. Our world is a scary place. You never know what is going to happen. Nothing is guaranteed. I can't imagine the fear, the terror, the everything, that people in those situations must feel,. That loved ones in those situations must feel.
But I think about it. As most people do I assume. After 9/11... kissing a loved one before going to work, before getting on a plane... it took on a new meaning, didn't it? After Columbine and Sandy Hook... pulling our kiddos in closer for a tighter hug, and a few more I love you's... right? Pausing for a moment before you went to the movies, or even to a sporting event... It's there.
But today, today what I was thinking about... what if it was Vicki's school that was being evacuated? In this world today, what if's don't seem so out in left field anymore. A few middle schools in our county have had bomb threats made this year. It could have been Vicki's school. It could be anyone's school.
I don't want to make it seem that my fear is any more important than your fear... fear is fear.
But I talk about this particular fear every time I walk into an IEP meeting for school and we discuss Vicki's list of 'accommodations'. We discuss it when we talk about fire drills. But we never discuss it to the degree that lessens my fear. I'm sure nothing will ever really lessen my fear.
Now, I've never worked in the school system or in the police department or fire department. I have no idea what it takes... what people do behind the scenes to execute a successful drill, or a successful emergency plan. I trust these people. I know they will do everything in their power to keep our children safe.
I'm having a hard time figuring out how to say what I want to say. So, let me just give you examples.
One of Vicki's accommodations is to have one of those chairs with wheels in any room that she is in at school. I'm sure one thing you've gathered about Vicki, and about a lot of children with autism, routines are followed. And if there is a hiccup in a routine, well, you never really know how Vicki will react. And I know you can't plan for every scenario. BUT I want to. It's in my nature to. Fire drills have historically been very difficult for Vicki. No child likes that sound, being disrupted, made to go stand out in the cold in a line for who knows how long... But with Vicki, she would drop to the ground. She would freeze in place. She would not follow simple directions. And the older she got, and the stronger and bigger she got, the harder it got. Enter the chair. Vicki would sit on the chair and her aide/teacher would be able to wheel her out. Until that stopped working. It can be so difficult now, especially if Vicki is having a really bad day, to even get her physically up and sitting in the chair. And if she gets in the chair, she knows how to brace herself in that chair so that it doesn't wheel. I've seen this firsthand. That day back in October when I had to pick her up from school to go to the ER. I think there were at times 5 people trying to wheel her out to my van. She never did get into the van. Granted, this was not an "emergency situation" per say, but Vicki was sick and we did need to get her to the doctor. And for that hour plus... we had the staff to try to help her. But it didn't work. There was another time when her teacher was out of school for the day and the sub had to endure a fire drill with Vicki. It did not go well. What if the people that were needed to physically pick Vicki up and move her (if that was even possible) were not available? Then what?
A few weeks ago, there was a sub bus driver taking Vicki from school to home at the end of the school day. Vicki ended up being about 20 minutes late that day because it was not her usual routine. The bus didn't stop at the exact spot that her normal bus did. There were little things that weren't the same. Who knows what affected Vicki. The sight of a different person, the subtle changes in routine, a different voice greeting her, having to walk a few more steps... who knows what it was. But it affected her. And honestly, this happened a few weeks ago. Her regular bus driver has been back for a long time now, but the routine that had changed that one day has caused a ripple effect for Vicki. She began a different OCD routine based out of her anxiety. And she is still struggling to make that transition. Last week one day, Vicki braced herself on the outside of the bus and it took quite a bit to get her on the bus. She came home with a slightly scraped and bleeding knuckle. Then even this past Monday, she continued to struggle with that transition and came home with another fresh scrape on her hand.
And these little instances are when there is no massive school wide panic. This is just Vicki struggling. This is autism. This is OCD. This is anxiety. This is PANDAs. This is a girl who can't transition to her normal bus at the normal time with her normal bus driver anymore because of the instances of one day. And this is a special needs bus. There are many accommodations that Vicki is privy to on it.
I can't imagine what it would be like for Vicki.... it scares me to the core of my being.... What would happen if Vicki's school had to be evacuated? What would happen if Vicki had to get on a different bus, with a different bus driver, at a different time, with different children. In mass hysteria.
So, for the frightened children that were being evacuated today from that other school... they had 4 transitions that they had to do. Right? They had to get on a bus, get off a bus and walk into another school, get back on the bus, and get off the bus and go back to their school. I seriously can't imagine what would happen with Vicki. Each of those transitions could feasibly take hours.
I know that I've been assured that Vicki would be safe in any kind of an emergency. And they would do whatever they had to do to get her to safety. I have heard of the massive amounts of endorphins that kick in during a fight-or flight situation. And the super human strength the can ensue. And I know that Vicki would not be left. But I can't help but imagine what it would take.... with all of the panic around... what it would take to get Vicki from point A to point B. It scares me. A lot.
It is definitely a scary world out there. And autism has made it even more scary for Vicki. And for me. Yep. I am afraid of autism.
Today there was another bomb threat at a local middle school in our county. Luckily, the building was cleared and all of the students/staff/responders were safe at the end of the day based on the reports that I saw. This has been happening with much more frequency, it seems. This school is in lock-down, that school is being evacuated. It's scary stuff. Our world is a scary place. You never know what is going to happen. Nothing is guaranteed. I can't imagine the fear, the terror, the everything, that people in those situations must feel,. That loved ones in those situations must feel.
But I think about it. As most people do I assume. After 9/11... kissing a loved one before going to work, before getting on a plane... it took on a new meaning, didn't it? After Columbine and Sandy Hook... pulling our kiddos in closer for a tighter hug, and a few more I love you's... right? Pausing for a moment before you went to the movies, or even to a sporting event... It's there.
But today, today what I was thinking about... what if it was Vicki's school that was being evacuated? In this world today, what if's don't seem so out in left field anymore. A few middle schools in our county have had bomb threats made this year. It could have been Vicki's school. It could be anyone's school.
I don't want to make it seem that my fear is any more important than your fear... fear is fear.
But I talk about this particular fear every time I walk into an IEP meeting for school and we discuss Vicki's list of 'accommodations'. We discuss it when we talk about fire drills. But we never discuss it to the degree that lessens my fear. I'm sure nothing will ever really lessen my fear.
Now, I've never worked in the school system or in the police department or fire department. I have no idea what it takes... what people do behind the scenes to execute a successful drill, or a successful emergency plan. I trust these people. I know they will do everything in their power to keep our children safe.
I'm having a hard time figuring out how to say what I want to say. So, let me just give you examples.
One of Vicki's accommodations is to have one of those chairs with wheels in any room that she is in at school. I'm sure one thing you've gathered about Vicki, and about a lot of children with autism, routines are followed. And if there is a hiccup in a routine, well, you never really know how Vicki will react. And I know you can't plan for every scenario. BUT I want to. It's in my nature to. Fire drills have historically been very difficult for Vicki. No child likes that sound, being disrupted, made to go stand out in the cold in a line for who knows how long... But with Vicki, she would drop to the ground. She would freeze in place. She would not follow simple directions. And the older she got, and the stronger and bigger she got, the harder it got. Enter the chair. Vicki would sit on the chair and her aide/teacher would be able to wheel her out. Until that stopped working. It can be so difficult now, especially if Vicki is having a really bad day, to even get her physically up and sitting in the chair. And if she gets in the chair, she knows how to brace herself in that chair so that it doesn't wheel. I've seen this firsthand. That day back in October when I had to pick her up from school to go to the ER. I think there were at times 5 people trying to wheel her out to my van. She never did get into the van. Granted, this was not an "emergency situation" per say, but Vicki was sick and we did need to get her to the doctor. And for that hour plus... we had the staff to try to help her. But it didn't work. There was another time when her teacher was out of school for the day and the sub had to endure a fire drill with Vicki. It did not go well. What if the people that were needed to physically pick Vicki up and move her (if that was even possible) were not available? Then what?
A few weeks ago, there was a sub bus driver taking Vicki from school to home at the end of the school day. Vicki ended up being about 20 minutes late that day because it was not her usual routine. The bus didn't stop at the exact spot that her normal bus did. There were little things that weren't the same. Who knows what affected Vicki. The sight of a different person, the subtle changes in routine, a different voice greeting her, having to walk a few more steps... who knows what it was. But it affected her. And honestly, this happened a few weeks ago. Her regular bus driver has been back for a long time now, but the routine that had changed that one day has caused a ripple effect for Vicki. She began a different OCD routine based out of her anxiety. And she is still struggling to make that transition. Last week one day, Vicki braced herself on the outside of the bus and it took quite a bit to get her on the bus. She came home with a slightly scraped and bleeding knuckle. Then even this past Monday, she continued to struggle with that transition and came home with another fresh scrape on her hand.
And these little instances are when there is no massive school wide panic. This is just Vicki struggling. This is autism. This is OCD. This is anxiety. This is PANDAs. This is a girl who can't transition to her normal bus at the normal time with her normal bus driver anymore because of the instances of one day. And this is a special needs bus. There are many accommodations that Vicki is privy to on it.
I can't imagine what it would be like for Vicki.... it scares me to the core of my being.... What would happen if Vicki's school had to be evacuated? What would happen if Vicki had to get on a different bus, with a different bus driver, at a different time, with different children. In mass hysteria.
So, for the frightened children that were being evacuated today from that other school... they had 4 transitions that they had to do. Right? They had to get on a bus, get off a bus and walk into another school, get back on the bus, and get off the bus and go back to their school. I seriously can't imagine what would happen with Vicki. Each of those transitions could feasibly take hours.
I know that I've been assured that Vicki would be safe in any kind of an emergency. And they would do whatever they had to do to get her to safety. I have heard of the massive amounts of endorphins that kick in during a fight-or flight situation. And the super human strength the can ensue. And I know that Vicki would not be left. But I can't help but imagine what it would take.... with all of the panic around... what it would take to get Vicki from point A to point B. It scares me. A lot.
It is definitely a scary world out there. And autism has made it even more scary for Vicki. And for me. Yep. I am afraid of autism.
Wednesday, April 27, 2016
Day 9. Year 6.
Well, I managed to write 8/27 days so far this month. Wait, I take that back. 2 of those days were Ally and Joe. Man, I sucked this year.
Want to hear my excuses for not posting? I have a lot of them.
Want to hear my excuses for not posting? I have a lot of them.
- I started writing my *Day 9* post a few weeks ago. But it was one of those hard posts. I was trying to answer some questions I've gotten recently. About the future. And that's hard for me So I kept putting it off. I would write a sentence or 2, cry, then save it in the draft folder. That happened for about a week.
- Then I decided that I needed to post about something, so I changed gears. And I started writing about me & my feelings, especially my feelings this past year. And that was hard for me. So I kept putting it off. I would write a sentence or 2, cry, then save it in the draft folder. See a pattern?
- Let's see. Then Ally turned 11. I think this may have been my last year for taking cupcakes into school for her. :( I'm guessing they don't do that much in middle school.
- Then we had some landscaping done at our house, 14 years in the making.
- Just when I was 'ready' to sit down and write again, Ally had her birthday sleepover party.
- And then the day after her party, she got sick. And has been sick ever since.
- So, now I am armed with Lysol. Ally and Joe both tested positive for the flu. And Ally has bronchitis.
- I never seem to finish anything anymore. And that bothers me.
- I think I feel like I always need to write something that has meaning and purpose. I don't want to waste anyone's time. But sometimes my brain lacks meaning and purpose. It's just going on auto-pilot. You know?
I'm exhausted tonight. Yet I can't sleep. I hate those nights when your brain won't shut down.
Last night I was all stressed out about the kids and the flu. And worrying about them. And then I was sitting at my nightly duty station. Parked right outside the bathroom on a folding chair peeking in on Vicki. I think I told you a little about her bathroom struggles at night. It's been happening since about November. Some nights it only takes about 15 minutes for her to sit down and go to the bathroom. Those nights are such a rarity and a treat. Some nights it takes 4-5 hours for her to sit down and go to the bathroom. Those nights are hard. Really hard. Most nights are somewhere in between. I never know until it's done what the time frame is for Vicki. Last night was a bad night. It took her until 1:30 to sit down and go to the bathroom. I think that plays into why I haven't been writing much this month. Sometimes it takes everything I have in me to walk back down the stairs after a particularly long and draining night with Vicki. I don't have it in me. You know I really want to talk about this bathroom thing. But I also really want to put up a post. Even an incomplete one. So I will stop there for tonight because I hear someone up. So I'm going to go check in on my sickies.
Much love to you all. Thanks, as always, for listening. xo
Sunday, April 10, 2016
Day 8. Year 6.
So, tonight's Joe's night. And how fitting. Facebook told me that it's *siblings day* today. Cool.
And in true Joe fashion, he was procrastinating on writing something up for me. He went to see the new Batman/Superman movie earlier today with his Dad, and then this came up, and that, and then something else. He finally went to write something up on his computer and he was going to email it to me. How convenient that his email crashed. Hmmm. Interesting. Very interesting.
Anyway, instead of making this a huge argument with my teenager, I decided to leave it alone. I wanted it to be something that he wanted to do. Not something that he felt he had to do, not a chore. I wanted his honesty and his thoughts. So I decided to go about it in a different way.
He's in 10th grade and is taking an Honors English course this year. He has a year long project that he is doing; he had to research and write papers using different literary genres on his topic of choice. You guessed it. His topic of choice is autism. I think that speaks volumes about Joe. Not only does he live with autism on a daily basis at home, he wanted to learn more and educate others more in school about autism, and specifically Vicki's autism, as well. He is constantly reviewing articles and submitting new pieces of writing for this project. So, I decided to steal one of his rough drafts (with his permission, of course) to use for tonight's blog post.
In Joe's own words, here is the autism he knows:
Vicki was born on May 12, 2002. She is one of my two younger sisters. She has Autism.
Vicki was diagnosed at a very young age. She has gone through many different treatment options, by which I mean therapy, as Autism has no cure. Since she was little, she has had therapists come over to our house to do therapy (ABA). We are always looking for new therapists, as the ones we hire are in college, and they all have to be trained. We have had over 20 therapists over the years.
Autism has greatly affected by my sister's life and my family's lives. Autism has many symptoms. Vicki has different speech patterns, often she speaks in fragments and in third person. Vicki doesn't respond to all questions, often just repeating the question. When she doesn't get the things she wants, she yells and may get aggressive sometimes. She cries randomly and without explanation. A while back she started to hurt herself, through smacking her head and tying to knee herself. Autism used to make Vicki terrified of animals, as in scream and try to run away terrified. Vicki also had elopement issues, meaning she has wandered off before. Vicki got out of our house one time when I was really young. We had to call the police and she was found a few houses down the street. That made us get alarms on all the doors and windows, so we know when they are opened. Recently, Vicki won't get into the car anymore, and being my height and strong, we can't get her into the car, even if we need to, without my Dad. When we went to The Netherlands, every time we got into or out of the car, we had to wait for usually a half an hour for Dad to be able to put her in the car. Vicki can not be left alone at home, even for a short period of time, and with her not being able to get into the car, getting somewhere or doing something is a challenge. Vicki has OCD, so combined with Autism, things NEED to be the way they should be. For example, Vicki needs to sit on the middle cushion on the couch; she won't sit on the ends. She also has PANDAS, which is a diagnosis for a subset of OCD or tics (an uncontrollable repeating behavior). Vicki also has seizures. So it's all very confusing and interconnected. She would freeze up and be completely unresponsive and repeat whatever she was doing, including shaking, swallowing, and blinking.
Despite all of this, my sister is a wonderful person. She loves our new puppy that we are training to be a service dog. She used to love horseback riding before she was scared of animals. She loves to draw and color. She really loves music, with some of her favorite songs being Cheerleader by OMI, Crazy by Gnarls Barkley, and Budapest by George Ezra. But most of all, she loves to cook; and a fantastic cook she is. My mother created a blog for her, as well as a P.O. Box, for people to send her recipes, and then Vicki would make it and mom would post pictures of the meal. Food Network or The Cooking Channel is commonly on TV in our house.
I hope with this you have a better understanding of what Autism can do to a child and her family.
Just as I said last night about Ally, I don't push Joe to open up. I know that when he wants or needs to talk, he does it in his own way, in his own time. I have tried not to badger him about this year long English project. I haven't asked to read his papers. He shows me when he is ready. I didn't see this one until after he turned it in. He knows I am here to talk anytime he wants to. And help him in any way possible, but it's his voice. Not mine. And I respect that.
I hope you enjoyed reading about Autism from Joe's perspective. I find it very interesting what the kids pick out to talk about. I really liked the last 2 days of posts and plan to interject their thoughts more on the blog if they let me.
Back to me tomorrow. Boo!!! ;) Thanks, as always, for reading and for loving and supporting our whole family. Love you. xoxo
And in true Joe fashion, he was procrastinating on writing something up for me. He went to see the new Batman/Superman movie earlier today with his Dad, and then this came up, and that, and then something else. He finally went to write something up on his computer and he was going to email it to me. How convenient that his email crashed. Hmmm. Interesting. Very interesting.
Anyway, instead of making this a huge argument with my teenager, I decided to leave it alone. I wanted it to be something that he wanted to do. Not something that he felt he had to do, not a chore. I wanted his honesty and his thoughts. So I decided to go about it in a different way.
He's in 10th grade and is taking an Honors English course this year. He has a year long project that he is doing; he had to research and write papers using different literary genres on his topic of choice. You guessed it. His topic of choice is autism. I think that speaks volumes about Joe. Not only does he live with autism on a daily basis at home, he wanted to learn more and educate others more in school about autism, and specifically Vicki's autism, as well. He is constantly reviewing articles and submitting new pieces of writing for this project. So, I decided to steal one of his rough drafts (with his permission, of course) to use for tonight's blog post.
In Joe's own words, here is the autism he knows:
Vicki was born on May 12, 2002. She is one of my two younger sisters. She has Autism.
Vicki was diagnosed at a very young age. She has gone through many different treatment options, by which I mean therapy, as Autism has no cure. Since she was little, she has had therapists come over to our house to do therapy (ABA). We are always looking for new therapists, as the ones we hire are in college, and they all have to be trained. We have had over 20 therapists over the years.
Autism has greatly affected by my sister's life and my family's lives. Autism has many symptoms. Vicki has different speech patterns, often she speaks in fragments and in third person. Vicki doesn't respond to all questions, often just repeating the question. When she doesn't get the things she wants, she yells and may get aggressive sometimes. She cries randomly and without explanation. A while back she started to hurt herself, through smacking her head and tying to knee herself. Autism used to make Vicki terrified of animals, as in scream and try to run away terrified. Vicki also had elopement issues, meaning she has wandered off before. Vicki got out of our house one time when I was really young. We had to call the police and she was found a few houses down the street. That made us get alarms on all the doors and windows, so we know when they are opened. Recently, Vicki won't get into the car anymore, and being my height and strong, we can't get her into the car, even if we need to, without my Dad. When we went to The Netherlands, every time we got into or out of the car, we had to wait for usually a half an hour for Dad to be able to put her in the car. Vicki can not be left alone at home, even for a short period of time, and with her not being able to get into the car, getting somewhere or doing something is a challenge. Vicki has OCD, so combined with Autism, things NEED to be the way they should be. For example, Vicki needs to sit on the middle cushion on the couch; she won't sit on the ends. She also has PANDAS, which is a diagnosis for a subset of OCD or tics (an uncontrollable repeating behavior). Vicki also has seizures. So it's all very confusing and interconnected. She would freeze up and be completely unresponsive and repeat whatever she was doing, including shaking, swallowing, and blinking.
Despite all of this, my sister is a wonderful person. She loves our new puppy that we are training to be a service dog. She used to love horseback riding before she was scared of animals. She loves to draw and color. She really loves music, with some of her favorite songs being Cheerleader by OMI, Crazy by Gnarls Barkley, and Budapest by George Ezra. But most of all, she loves to cook; and a fantastic cook she is. My mother created a blog for her, as well as a P.O. Box, for people to send her recipes, and then Vicki would make it and mom would post pictures of the meal. Food Network or The Cooking Channel is commonly on TV in our house.
I hope with this you have a better understanding of what Autism can do to a child and her family.
Just as I said last night about Ally, I don't push Joe to open up. I know that when he wants or needs to talk, he does it in his own way, in his own time. I have tried not to badger him about this year long English project. I haven't asked to read his papers. He shows me when he is ready. I didn't see this one until after he turned it in. He knows I am here to talk anytime he wants to. And help him in any way possible, but it's his voice. Not mine. And I respect that.
I hope you enjoyed reading about Autism from Joe's perspective. I find it very interesting what the kids pick out to talk about. I really liked the last 2 days of posts and plan to interject their thoughts more on the blog if they let me.
Back to me tomorrow. Boo!!! ;) Thanks, as always, for reading and for loving and supporting our whole family. Love you. xoxo
Saturday, April 9, 2016
Day 7. Year 6.
Tonight I decided to do something a little different. I decided to let Ally write. I did not censor her or change her wording at all. I wanted it to be her voice. She did ask me to ask her questions so it could guide her writing. Pretty sure the questions I asked her are evident. I think it's fascinating getting a glimpse into the autism that Ally sees. Ally talks a lot to her school guidance counselor when things are difficult at home. I never pry. I want her to be able to talk freely to someone without worrying if it will hurt my feelings or make me upset. So without further adieu... here's Ally!
Hi, I am Ally, Vicki's little sister.
I will be turning 11 next week; I am in 5th grade and
I LOVE TO CRAFT!!!!!
It may be because I am home a lot. But that's o.k. Because I get to spend time with my family.
You may think it's hard having a sibling with autism, it is. But we manage.
Sometimes I worry about my sister or my mom or dad getting hurt when Vicki is having a hard time and I have to go in a different room.
I remember once when Vicki was having a hard time in her bedroom and she pushed me. I went to my room and Joey came in and I sat on his lap and cried. He was telling me I was o.k. and he was telling me jokes and making me laugh.
I think it's sometimes hard to have an older sister with autism because a lot of people have to come in and help her with stuff. When they leave and grow older I am sad because I got attached to them. Sometimes they are like my older sister, because they do what I think older sisters would do. They talk to me and help me and have fun with me. And I think I can't do all that stuff with Vicki sometimes.
I think I help Vicki with a lot of things because I think sometimes Vicki wants to copy me. I get very annoyed sometimes, but mom says it's because Vicki wants to be a lot like me. It's because I'm fabulous. :) I help her when I'm baking because sometimes when I am baking she comes in and wants to do it. She copies me a lot when I am drawing and I help her read.
There are a lot of things that are hard to do with Vicki having autism. Whenever I want to go somewhere or do something, my mom always has to stay here with Vicki and her therapist. So I get sad sometimes because my mom can't always do things with me. Going to Pennsylvania is really hard because she won't get in the car and I really want to see my cousins and grandparents. I think she wants to go in the car, but something is telling her she can't. Right now my mom can't volunteer for field trips and that makes me sangry. Get it? Sad and angry. Ha ha.
What I like about my sister is that she always pushes through things even if it's hard. It motivates me to do things that are hard too. I like how Vicki used to like to paint her nails red. I can't stand painting my nails because the nail polish chips off and they look yucky when that happens.
Some people at my school judged Vicki a few years ago because she had to walk with an aide and she never took regular classes. Yes, she has to do that stuff, but you don't have to make fun of someone for doing things differently. I think that's what makes a person unique.
It's electrifying!
We all gotta shape up!
From one of my favorite songs from Grease.
Thanks. I'm done.....................................................................
So what did you think? I am super proud of Ally for writing this. Tomorrow night you will get to hear from Vicki's older brother, Joe. A little change of pace. And then back to whiny ol' me. :) Love you all. Thanks for your support, always. xoxo
Hi, I am Ally, Vicki's little sister.
I will be turning 11 next week; I am in 5th grade and
I LOVE TO CRAFT!!!!!
It may be because I am home a lot. But that's o.k. Because I get to spend time with my family.
You may think it's hard having a sibling with autism, it is. But we manage.
Sometimes I worry about my sister or my mom or dad getting hurt when Vicki is having a hard time and I have to go in a different room.
I remember once when Vicki was having a hard time in her bedroom and she pushed me. I went to my room and Joey came in and I sat on his lap and cried. He was telling me I was o.k. and he was telling me jokes and making me laugh.
I think it's sometimes hard to have an older sister with autism because a lot of people have to come in and help her with stuff. When they leave and grow older I am sad because I got attached to them. Sometimes they are like my older sister, because they do what I think older sisters would do. They talk to me and help me and have fun with me. And I think I can't do all that stuff with Vicki sometimes.
I think I help Vicki with a lot of things because I think sometimes Vicki wants to copy me. I get very annoyed sometimes, but mom says it's because Vicki wants to be a lot like me. It's because I'm fabulous. :) I help her when I'm baking because sometimes when I am baking she comes in and wants to do it. She copies me a lot when I am drawing and I help her read.
There are a lot of things that are hard to do with Vicki having autism. Whenever I want to go somewhere or do something, my mom always has to stay here with Vicki and her therapist. So I get sad sometimes because my mom can't always do things with me. Going to Pennsylvania is really hard because she won't get in the car and I really want to see my cousins and grandparents. I think she wants to go in the car, but something is telling her she can't. Right now my mom can't volunteer for field trips and that makes me sangry. Get it? Sad and angry. Ha ha.
What I like about my sister is that she always pushes through things even if it's hard. It motivates me to do things that are hard too. I like how Vicki used to like to paint her nails red. I can't stand painting my nails because the nail polish chips off and they look yucky when that happens.
Some people at my school judged Vicki a few years ago because she had to walk with an aide and she never took regular classes. Yes, she has to do that stuff, but you don't have to make fun of someone for doing things differently. I think that's what makes a person unique.
It's electrifying!
We all gotta shape up!
From one of my favorite songs from Grease.
Thanks. I'm done.....................................................................
So what did you think? I am super proud of Ally for writing this. Tomorrow night you will get to hear from Vicki's older brother, Joe. A little change of pace. And then back to whiny ol' me. :) Love you all. Thanks for your support, always. xoxo
Friday, April 8, 2016
Day 6. Year 6.
I think one of the hardest things for me is living in fear. It's a fear that's like no other that I've ever had. And I'm not exactly sure how to describe it.
For the most part, I would say this week was a *good* week. Vicki was able to get on her bus at 7:37 every morning. {On Monday, I needed my husband to get her up out of bed, if he hadn't... then this week, I'm sure, would have played out very differently. Tuesday I had to do a lot of physical assistance and timer/clock work to get her through her morning routine. By Wednesday she had started to internalize her 'new' morning ocd routine. And Thursday and today went about as well as I could have asked for.} You would think that would make me happy. It did. I was very happy with the progress we made. I was so proud of Vicki, and also proud of myself for keeping things calm and flowing as much as I could. And proud that we found something that works, for the moment. It felt good. And dare I say, it felt comfortable and secure by the end of the week.
But most of the time I try not to get too comfortable or too secure. And I think it's partly because of fear. Sometimes I don't enjoy the moment as much as I know I should. I don't celebrate a victory as much as I know I should. Because I am always waiting, always anticipating, always afraid. Especially this year.
I wish I knew. I wish I had a very specific list of *triggers*. Things I could always avoid so that we keep flowing. But no one can avoid things altogether. Not even if you know what you need to avoid. Oh, I have my gut feeling, I have a hunch. I have past experiences to draw from. But I can never say with certainty what it is that will set off a spiral that we have trouble recovering from.
I keep waiting for that something. Sometimes I can pinpoint that something. Other times I have nothing. It blindsides me. I understand that life is full of uncertainty and no one can anticipate how something is going to play out. I do.
But, in a very general scenario, most of the time I know that when Joe and Ally get up in the morning, they will get dressed and catch the bus for school. But with Vicki, I don't have that. I have no idea what the morning will bring. We could be flowing along in a very specific, very detailed OCD scheduled scenario. Vicki has to complete one task in the way that only she knows how it has to play out, before she can complete another. The kicker is, I have no idea what that is. Ever. I have no idea how her brain is firing. I have no idea what has to happen or what is happening that makes things go so wrong.
There tends to be a predictability, a familiarity, in mundane tasks.
But with Vicki, the predictable can rarely be predicted anymore. For instance, we were flowing through the morning routine on Wednesday... I know the places in her schedule that we *typically* have hiccups at. {For example... physically sitting up and getting out of bed has been a big deal breaker lately. And I will say, even if my husband is home and he tries to get her up, if there is something stopping her, something in her head stopping her, even he won't get her up. And if he does, then because we interrupted the sequence of what had to happen in her head, the next step and the next step are thrown off. And we won't make it on the bus. Because she can't get through it. She will fight and fight hard. Another stopping point is either before or after her shower when she is sitting on the potty. If she doesn't pee, then sometimes she won't move. Or it could be something way more complex than that in her mind, I have no idea. But, usually, once she is getting her clothes on and I am combing her hair, I know that the rest of her morning routine will happen and we will make it on the bus in time.} But on Wednesday, the whole morning went so well, so smoothly, that we were ready a few minutes ahead of our normal schedule. And that was different. Because the extra time was thrown in, or for some other reason I was not aware of, Vicki froze at the top of our driveway. And there was that fear that I am talking about. It wells up inside of me. The moment I feel her freeze. The fear is there, strangling me. If I can't figure out the reason she has stopped, or what will make her go again, then we are screwed. We could potentially be standing at the top of the driveway all day long. You probably read that and though... no. That can't happen. I am here to say, yes it could. It absolutely could. Because sometimes it doesn't make sense on the surface, but it does to Vicki. And I have seen how long it can take to "un-freeze" her, or wait her out, or whatever you want to call it.
So that's it. That's only one of a thousand examples that occur each and every day. That's why I live in fear. That's why when I sit in meetings and someone talks about fading back certain supports we have in place, I cringe. I, of course, want to see Vicki be successful and I want to pull back when we can. But, I also know that things can change in an instant. The wind blows. And we need that support back. I can't anticipate what day of the week it will be or whether it will be 2 weeks from now or next month. But I know it will happen. And I don't want to be left without a back-up plan.
It's really hard to explain this if you think in terms of behavior only. I know, deep down inside, I know it's not just a behavior. It is so much more. And until we can find out how to help Vicki, it will keep happening.
Just one more example for tonight... I just got done saying how this week was *good*. And I use the word *good* very loosely. Because even thought it is better than last week, it's really hard to define good. Good to me is my Vicki smiling and laughing and being able to get into and out of the car. Good to me is being able to do the things she could do 4 years ago or last year. How good is good if you can't even try anymore? Sorry, Squirrel. Anyway... the example. Based on my description of this week getting onto the bus, you would think that most of her bus transitions would be pretty decent. Well, on Wednesday, I noticed that her bus wasn't pulling up to our driveway within the usual time frame after school. Maybe there was a bit of traffic. Maybe another student had a little trouble. But even thought I didn't know why the bus was running a bit behind schedule, the fear started creeping in. I just knew. I knew Vicki was having trouble. And by the time the bus pulled in 25 minutes late, I knew why. She was having a good day, until she wasn't. And that's when a struggle ensued. Sometimes it takes everything everybody working with Vicki has to get her onto that bus. And I appreciate it. I really do. I know they love her and care about her and want to help her. But when that block comes from Vicki, that's it. It's hard for anyone to get past it. Most of the time I don't want to describe in detail what anyone has to do to get past it with Vicki. And I won't now, either.
I just used this as another example. And example of living in fear. It's not easy.
I will admit something here. I wanted to end this post with a cute little quote about fear. But when I googled 'quotes about fear' and started reading them, I just got really sad. I just read a quote that said:
Don't lose yourself in your fear.
Sometimes I'm afraid I already have. xoxo
For the most part, I would say this week was a *good* week. Vicki was able to get on her bus at 7:37 every morning. {On Monday, I needed my husband to get her up out of bed, if he hadn't... then this week, I'm sure, would have played out very differently. Tuesday I had to do a lot of physical assistance and timer/clock work to get her through her morning routine. By Wednesday she had started to internalize her 'new' morning ocd routine. And Thursday and today went about as well as I could have asked for.} You would think that would make me happy. It did. I was very happy with the progress we made. I was so proud of Vicki, and also proud of myself for keeping things calm and flowing as much as I could. And proud that we found something that works, for the moment. It felt good. And dare I say, it felt comfortable and secure by the end of the week.
But most of the time I try not to get too comfortable or too secure. And I think it's partly because of fear. Sometimes I don't enjoy the moment as much as I know I should. I don't celebrate a victory as much as I know I should. Because I am always waiting, always anticipating, always afraid. Especially this year.
I wish I knew. I wish I had a very specific list of *triggers*. Things I could always avoid so that we keep flowing. But no one can avoid things altogether. Not even if you know what you need to avoid. Oh, I have my gut feeling, I have a hunch. I have past experiences to draw from. But I can never say with certainty what it is that will set off a spiral that we have trouble recovering from.
I keep waiting for that something. Sometimes I can pinpoint that something. Other times I have nothing. It blindsides me. I understand that life is full of uncertainty and no one can anticipate how something is going to play out. I do.
But, in a very general scenario, most of the time I know that when Joe and Ally get up in the morning, they will get dressed and catch the bus for school. But with Vicki, I don't have that. I have no idea what the morning will bring. We could be flowing along in a very specific, very detailed OCD scheduled scenario. Vicki has to complete one task in the way that only she knows how it has to play out, before she can complete another. The kicker is, I have no idea what that is. Ever. I have no idea how her brain is firing. I have no idea what has to happen or what is happening that makes things go so wrong.
There tends to be a predictability, a familiarity, in mundane tasks.
But with Vicki, the predictable can rarely be predicted anymore. For instance, we were flowing through the morning routine on Wednesday... I know the places in her schedule that we *typically* have hiccups at. {For example... physically sitting up and getting out of bed has been a big deal breaker lately. And I will say, even if my husband is home and he tries to get her up, if there is something stopping her, something in her head stopping her, even he won't get her up. And if he does, then because we interrupted the sequence of what had to happen in her head, the next step and the next step are thrown off. And we won't make it on the bus. Because she can't get through it. She will fight and fight hard. Another stopping point is either before or after her shower when she is sitting on the potty. If she doesn't pee, then sometimes she won't move. Or it could be something way more complex than that in her mind, I have no idea. But, usually, once she is getting her clothes on and I am combing her hair, I know that the rest of her morning routine will happen and we will make it on the bus in time.} But on Wednesday, the whole morning went so well, so smoothly, that we were ready a few minutes ahead of our normal schedule. And that was different. Because the extra time was thrown in, or for some other reason I was not aware of, Vicki froze at the top of our driveway. And there was that fear that I am talking about. It wells up inside of me. The moment I feel her freeze. The fear is there, strangling me. If I can't figure out the reason she has stopped, or what will make her go again, then we are screwed. We could potentially be standing at the top of the driveway all day long. You probably read that and though... no. That can't happen. I am here to say, yes it could. It absolutely could. Because sometimes it doesn't make sense on the surface, but it does to Vicki. And I have seen how long it can take to "un-freeze" her, or wait her out, or whatever you want to call it.
So that's it. That's only one of a thousand examples that occur each and every day. That's why I live in fear. That's why when I sit in meetings and someone talks about fading back certain supports we have in place, I cringe. I, of course, want to see Vicki be successful and I want to pull back when we can. But, I also know that things can change in an instant. The wind blows. And we need that support back. I can't anticipate what day of the week it will be or whether it will be 2 weeks from now or next month. But I know it will happen. And I don't want to be left without a back-up plan.
It's really hard to explain this if you think in terms of behavior only. I know, deep down inside, I know it's not just a behavior. It is so much more. And until we can find out how to help Vicki, it will keep happening.
Just one more example for tonight... I just got done saying how this week was *good*. And I use the word *good* very loosely. Because even thought it is better than last week, it's really hard to define good. Good to me is my Vicki smiling and laughing and being able to get into and out of the car. Good to me is being able to do the things she could do 4 years ago or last year. How good is good if you can't even try anymore? Sorry, Squirrel. Anyway... the example. Based on my description of this week getting onto the bus, you would think that most of her bus transitions would be pretty decent. Well, on Wednesday, I noticed that her bus wasn't pulling up to our driveway within the usual time frame after school. Maybe there was a bit of traffic. Maybe another student had a little trouble. But even thought I didn't know why the bus was running a bit behind schedule, the fear started creeping in. I just knew. I knew Vicki was having trouble. And by the time the bus pulled in 25 minutes late, I knew why. She was having a good day, until she wasn't. And that's when a struggle ensued. Sometimes it takes everything everybody working with Vicki has to get her onto that bus. And I appreciate it. I really do. I know they love her and care about her and want to help her. But when that block comes from Vicki, that's it. It's hard for anyone to get past it. Most of the time I don't want to describe in detail what anyone has to do to get past it with Vicki. And I won't now, either.
I just used this as another example. And example of living in fear. It's not easy.
I will admit something here. I wanted to end this post with a cute little quote about fear. But when I googled 'quotes about fear' and started reading them, I just got really sad. I just read a quote that said:
Don't lose yourself in your fear.
Sometimes I'm afraid I already have. xoxo
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