Soooooooo... we started school. And it was what can only be described as an epic. fail. (borrowed this term from a bunch of first graders at a party this weekend).
It started out rough. I got a call the thursday before Monday's school start from B's soon-to-be teacher. She was calling to say that her leave was starting early and that her sub fell through. In a nutshell, there was no teacher assigned. Deep breath. Mini breakdown. And we keep going. We go to the open house that same night. The classroom was empty. No one there to greet us - no one to introduce B. to this new "home".
Monday came and we went to school. B was always so excited to go to this place to drop off his brother. I expected the same reaction. On the drive to school, he was silent. I kept telling him that this was his first day of school, how exciting it was. Meanwhile, I was a nervous wreck and I'm sure he felt it. When we arrived, he refused to get out of the car. Crying, pleading with me with his very limited vocabulary "no walk, no backpack, pick me up". I got him in and we made it to the first day. I think I spent more time at school that day than I did away, but we got through it. There was a sub - hired just 2 days ago and we were "lucky" to have her. B. was happy there. This we could do.
We muddled through. B. had one more rough drop-off and then he was totally on board... excited to be there and his happy, giggly self.
But it just wasn't right. Turns out that hiring a teacher 3 days before school starts does not necessarily lead to the best fit. We tried. Gave it the benefit of the doubt. This was new. It was going to be an adjustment. They were just getting to know B. and it would take time.
So I waited. I tried to believe it was going to be okay. But I kept getting the wrong message... the teacher telling me that he was getting "the cadillac of services" while other students were suffering. Random drop-ins where he was almost always alone, bouncing on a ball. I had no idea what he was doing all day. I volunteered. I popped in. I pushed and I got permission for our therapists to accompany him and train the teacher. I met with the principal. I made phone calls to the district. I talked to other parents to see if maybe it was just me. I felt so disconnected. The only communication I received said things like "happy, ate his lunch". But what was he learning? What was he doing? Who was with him?
In the midst of this, something beautiful happened. I saw B. through the eyes of other kids. Not as the little brother. Not as our kid. But as B., the 1st grader, who other kids wanted to get to know. I was shocked and overwhelmed by this response. Kids wanted to help him. They wanted to know him. They didn't view him as a freak. They were interested in how he communicated. They wanted to be with him, wanted to be his friend, wanted to learn more about him. It kept me there. It made up for the lack of communication, the fact that we were losing skills, moving backward.
And then it got worse. B. wandered off one day - unsupervised. He still had no set schedule and I still wasn't getting any communication about what he was doing. I hit the roof when I found out he was unsupervised. The teacher became the scapegoat and they fired her that day.
So we were back to square one. No teacher. No one to look after these kids. Their solution was to hire a sub who did not have a special education license until they could find the perfect fit. I made it through a couple of partial days of this. How can an untrained teacher be responsible for my mostly nonverbal son? My final straw came when I picked up my boy and he had unexplained and unnoticed blood on his clothes.
I took him out and haven't looked back.
We're at a new school now. It too was a rough start. B. FREAKED out like I've never seen and I chased him in a parking lot, in the snow, for an hour and a half trying to coax him back in.
We've only had a few days so far. Too soon to tell. But I get videos and pics about his day and his teacher cares so much that she notices things like chapped lips and runny noses. I can't fathom that he would ever have blood on his clothes there without it being noticed. He is not only cared for there but he is loved already.
We're in a better place, I think. Thank goodness B. is a resilient kiddo. He has been through so much. It makes me so sad. He is such a great, sweet kid. In fact, his classroom was filled with great, sweet kids. They were another reason I wanted to stay. They deserve more. They deserve better. I hope we have found better. I hope it's better for all of them too.
xmas 2013
Wednesday, December 10, 2014
Wednesday, August 20, 2014
The next chapter
In just a few short days, our little B-man is starting first grade. He'll go 3 days a week for the first month and have a little bit of therapy on his off days. And then he goes full-time and the therapy fades out over the next 2 months. After 4 years of full-time therapy in our home, it's a whole new world for him and for our family. And frankly I'm terrified. I remember when I first dropped my kiddos off at a Friday Morning Out program. They were not quite 2 and 3 and it was the first time I formally separated from them. And I was nervous, worried and apprehensive to be away from my babies. It was tough. But we did it! Everyone was okay.
Here we are now 5 years later with more parenting experience under our belts, more of an understanding of our kiddos and in B's case, his special needs. Not to mention we have MUCH bigger, older, less fragile little people. So this should be easier, right? I've been down this road... I eased in to part-time preschool, then half-day kindergarten and last year, the real deal: first grade with our older son. And sure it's hard for any parent to let em go as they start to gain their independence.
But this. THIS is so much harder. Because truly there is no one quite like B. I honestly believe that. For six and a half years, he has been under my wing. I am almost always with him and if I'm not, I know exactly what he's doing and I know the people he is with. I know what challenges he might face and I know how it will be handled. I have been trained to do all of the same programs with him. I get it. And we've created an environment where we celebrate him constantly. It's a bit of a bubble, yes, but here we focus on all that he can do and every single day he has cheerleaders. His therapists are the closest thing he has to friends. They are his buddies. They know how to play with him. They can understand (most) of what he says. A lot of them have gotten very attached to my sweet little boy. He is loved. Their boundaries are different than what I expect them to be in school. He gets hugs, piggy backs, snuggles, tickles and lots of physical attention that I don't see being equal at school. How can we take that away from him? This bubble is a lot easier than when we take him out in the "real" world and see how others react to him and how different he really is. Are they going to see the real B at school? Will they appreciate how special he is?
What he doesn't get at home though is other kids. And, let's face it, reality. There is a whole world out there that he is itching to experience. That part I think he'll love. Here's a kid who gets excited to go no matter where it is: the Dr., an errand with mom, dropping his brother off at school. As the other kids would march in to battle with solemn faces at the elementary school, B would skip in with absolute glee - singing. A couple of times last year, he cried when we left for the parking lot. On that front, he is more than ready. He has spent way too much time confined to this house. I am excited for him to get to experience what other kids his age experience.
B is ready. And I will get there. Just like 4 years ago, we are jumping in with both feet. So if you see me next week (or let's face it anytime next year), I will be the mom beaming with pride and blinking back my tears. Look out first grade - here we come!
Here we are now 5 years later with more parenting experience under our belts, more of an understanding of our kiddos and in B's case, his special needs. Not to mention we have MUCH bigger, older, less fragile little people. So this should be easier, right? I've been down this road... I eased in to part-time preschool, then half-day kindergarten and last year, the real deal: first grade with our older son. And sure it's hard for any parent to let em go as they start to gain their independence.
But this. THIS is so much harder. Because truly there is no one quite like B. I honestly believe that. For six and a half years, he has been under my wing. I am almost always with him and if I'm not, I know exactly what he's doing and I know the people he is with. I know what challenges he might face and I know how it will be handled. I have been trained to do all of the same programs with him. I get it. And we've created an environment where we celebrate him constantly. It's a bit of a bubble, yes, but here we focus on all that he can do and every single day he has cheerleaders. His therapists are the closest thing he has to friends. They are his buddies. They know how to play with him. They can understand (most) of what he says. A lot of them have gotten very attached to my sweet little boy. He is loved. Their boundaries are different than what I expect them to be in school. He gets hugs, piggy backs, snuggles, tickles and lots of physical attention that I don't see being equal at school. How can we take that away from him? This bubble is a lot easier than when we take him out in the "real" world and see how others react to him and how different he really is. Are they going to see the real B at school? Will they appreciate how special he is?
What he doesn't get at home though is other kids. And, let's face it, reality. There is a whole world out there that he is itching to experience. That part I think he'll love. Here's a kid who gets excited to go no matter where it is: the Dr., an errand with mom, dropping his brother off at school. As the other kids would march in to battle with solemn faces at the elementary school, B would skip in with absolute glee - singing. A couple of times last year, he cried when we left for the parking lot. On that front, he is more than ready. He has spent way too much time confined to this house. I am excited for him to get to experience what other kids his age experience.
B is ready. And I will get there. Just like 4 years ago, we are jumping in with both feet. So if you see me next week (or let's face it anytime next year), I will be the mom beaming with pride and blinking back my tears. Look out first grade - here we come!
Tuesday, January 28, 2014
Love/Hate
I love my child. Fiercely. In a way that I have never loved any other person in my life. He is amazing, beautiful and pure. But I hate his Autism. Hate it. I would give just about anything to just make it go away.
This may not be a popular point of view. People who have Autism want to be accepted and I've read countless articles about how we as parents should embrace the whole person, shouldn't try to change them, etc. etc. And, while I do try very hard to find the positive in B's diagnosis (there are definitely some pros), the truth of the matter is that it sucks. It has such a huge impact on our world and our family and has changed everything about it. These are just a few of things in no particular order that are on my mind lately. I should also point out that this is all from my perspective... I hate it times a million for B. I can't imagine how horribly frustrating it must be to be him - unable to communicate, in therapy 40+ hours a week, so different from other kids, without friends. How lonely he must be. Here's what keeps me up at night:
1) Sleep - literally and figuratively. It used to take B. two or 2.5 hours to fall asleep at night. Now, with the help of melatonin, he falls asleep almost instantly. And some nights, he sleeps all night. Other nights (lately pretty much every other night), he sleeps until about midnight and then he's UP. The boy throws a party in his room for as many as 6 or 7 hours at times. He very loudly sings, laughs, yells and RUNS on his bed and God knows what else. The house shakes sometimes. I guess we're lucky because he does not require us to actually get up. It's just not easy to sleep through and I usually lie awake worrying about the fact that both he and I should be sleeping. When we visit family or take a vacation, it's worse because if he doesn't sleep, nobody sleeps. Nothing puts a bigger damper on a "vacation" than 3 or 4 people (my other son blessedly sleeps through it most of the time) who are so sleep deprived, they can barely function.
2) Not being able to do things as a family. We usually have to choose whether to do something the way most families would or whether to try it with B. It's not his fault (obviously) but it is very tough to go places and do things with him. Sometimes it goes smoothly and sometimes he sits down at the base of an escalator and refuses to move. It is completely unpredictable. This is getting MUCH harder the older he gets because he's too big to pick up and I literally can not make him do things a lot of the time. In fact, most things are getting harder instead of easier. We are supposed to be moving in the opposite direction. So we do a lot of things as a party of 3 - going out to eat, going to movies, birthday parties, playdates, even vacation sometimes. It's easier that way and yet it's so much harder to leave him behind.
3) The crying. I listen to B cry at least 5 or 6 times a day. Think about that. He is 6. How often do you have to hear your 6 year old cry? For my 7 year old, I'm thinking it's maybe once a month. And B's cries are heartbreaking because most of the time I don't know why and I can almost never make it any better. He pushes me away and tries to make the tears go away too. This is true whether he is hurt, sad, mad, sick or frustrated. I can only guess the reason and I'm pretty sure I'm wrong a lot of the time.
4) Our lifestyle that no one can truly relate to. For three and a half years, our world has revolved around ABA therapy. We have a team of 6 people (give or take) in our home 40+ hours a week. While I am grateful that we live in a place with such great resources, this way of life is not easy. It means never being alone, always having an audience while you eat, clean, parent, live. It means 10-15 hours per week of parent training and meetings. It means playdates where you have to play in a limited space so as not to disturb "teaching". It means having all of your toys taken apart and repurposed and often times missing or misplaced. It means extra coats, extra shoes, extra coffee cups and a house that can never be as clean as I want it to be. It means never having a weekend off and always opening our door at 8 a.m. ready to start the day. And it's something you have to experience to understand which can feel very isolating.
5) Communication. I remember sitting in an ECFE class when B was not yet 2 and expressing concern about him being a "late talker". And I remember saying that we felt like we didn't really know him without it. And I still feel this way today. I know B, better than anyone really, but I don't really know him. I know who he is in spite of his Autism. I know what he seems to like to do and what makes him seem happiest but I don't truly know him. I have never been able to ask him a question. He has never told me anything other than a simple 2 word request. He has never called out to me or showed me something of interest. As grateful as I am to get to experience being a parent to a "typical" child, it makes it so much clearer what we are missing. Every single word B. has ever spoken has been hard work. I remember the magic in watching my older son learn to talk, how cute his early speech was and how fast his vocabulary evolved. With B, language development & communication has only been work, confusion, frustration and despair. You don't realize how important this is until you don't have it.
6) Uncertainty about his future. This is the biggie. All of this would be a lot easier to handle if we knew how it turned out. If we knew we were doing the right things, working toward the right goals, doing what's best for B. If we knew he was going to be okay. Of course we don't know the future for any kid but we do know that they will grow up and be independent some day, however that may look. With B, we don't have that same certainty. It's terrifying and I can only allow myself to think about it once in a great while or it is just too much.
I'm not looking for a pity party. I know that you don't ever have to look very far to find someone who has it far, far worse. This is just how I feel lately and it has kept me from wanting to blog and share our day to day experiences. I'm burned out. I'm sure B. is too. It is painfully hard work.
This may not be a popular point of view. People who have Autism want to be accepted and I've read countless articles about how we as parents should embrace the whole person, shouldn't try to change them, etc. etc. And, while I do try very hard to find the positive in B's diagnosis (there are definitely some pros), the truth of the matter is that it sucks. It has such a huge impact on our world and our family and has changed everything about it. These are just a few of things in no particular order that are on my mind lately. I should also point out that this is all from my perspective... I hate it times a million for B. I can't imagine how horribly frustrating it must be to be him - unable to communicate, in therapy 40+ hours a week, so different from other kids, without friends. How lonely he must be. Here's what keeps me up at night:
1) Sleep - literally and figuratively. It used to take B. two or 2.5 hours to fall asleep at night. Now, with the help of melatonin, he falls asleep almost instantly. And some nights, he sleeps all night. Other nights (lately pretty much every other night), he sleeps until about midnight and then he's UP. The boy throws a party in his room for as many as 6 or 7 hours at times. He very loudly sings, laughs, yells and RUNS on his bed and God knows what else. The house shakes sometimes. I guess we're lucky because he does not require us to actually get up. It's just not easy to sleep through and I usually lie awake worrying about the fact that both he and I should be sleeping. When we visit family or take a vacation, it's worse because if he doesn't sleep, nobody sleeps. Nothing puts a bigger damper on a "vacation" than 3 or 4 people (my other son blessedly sleeps through it most of the time) who are so sleep deprived, they can barely function.
2) Not being able to do things as a family. We usually have to choose whether to do something the way most families would or whether to try it with B. It's not his fault (obviously) but it is very tough to go places and do things with him. Sometimes it goes smoothly and sometimes he sits down at the base of an escalator and refuses to move. It is completely unpredictable. This is getting MUCH harder the older he gets because he's too big to pick up and I literally can not make him do things a lot of the time. In fact, most things are getting harder instead of easier. We are supposed to be moving in the opposite direction. So we do a lot of things as a party of 3 - going out to eat, going to movies, birthday parties, playdates, even vacation sometimes. It's easier that way and yet it's so much harder to leave him behind.
3) The crying. I listen to B cry at least 5 or 6 times a day. Think about that. He is 6. How often do you have to hear your 6 year old cry? For my 7 year old, I'm thinking it's maybe once a month. And B's cries are heartbreaking because most of the time I don't know why and I can almost never make it any better. He pushes me away and tries to make the tears go away too. This is true whether he is hurt, sad, mad, sick or frustrated. I can only guess the reason and I'm pretty sure I'm wrong a lot of the time.
4) Our lifestyle that no one can truly relate to. For three and a half years, our world has revolved around ABA therapy. We have a team of 6 people (give or take) in our home 40+ hours a week. While I am grateful that we live in a place with such great resources, this way of life is not easy. It means never being alone, always having an audience while you eat, clean, parent, live. It means 10-15 hours per week of parent training and meetings. It means playdates where you have to play in a limited space so as not to disturb "teaching". It means having all of your toys taken apart and repurposed and often times missing or misplaced. It means extra coats, extra shoes, extra coffee cups and a house that can never be as clean as I want it to be. It means never having a weekend off and always opening our door at 8 a.m. ready to start the day. And it's something you have to experience to understand which can feel very isolating.
5) Communication. I remember sitting in an ECFE class when B was not yet 2 and expressing concern about him being a "late talker". And I remember saying that we felt like we didn't really know him without it. And I still feel this way today. I know B, better than anyone really, but I don't really know him. I know who he is in spite of his Autism. I know what he seems to like to do and what makes him seem happiest but I don't truly know him. I have never been able to ask him a question. He has never told me anything other than a simple 2 word request. He has never called out to me or showed me something of interest. As grateful as I am to get to experience being a parent to a "typical" child, it makes it so much clearer what we are missing. Every single word B. has ever spoken has been hard work. I remember the magic in watching my older son learn to talk, how cute his early speech was and how fast his vocabulary evolved. With B, language development & communication has only been work, confusion, frustration and despair. You don't realize how important this is until you don't have it.
6) Uncertainty about his future. This is the biggie. All of this would be a lot easier to handle if we knew how it turned out. If we knew we were doing the right things, working toward the right goals, doing what's best for B. If we knew he was going to be okay. Of course we don't know the future for any kid but we do know that they will grow up and be independent some day, however that may look. With B, we don't have that same certainty. It's terrifying and I can only allow myself to think about it once in a great while or it is just too much.
I'm not looking for a pity party. I know that you don't ever have to look very far to find someone who has it far, far worse. This is just how I feel lately and it has kept me from wanting to blog and share our day to day experiences. I'm burned out. I'm sure B. is too. It is painfully hard work.
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