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!
xmas 2013
Wednesday, August 20, 2014
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.
Tuesday, October 22, 2013
Food Glorious Food
Here is a looooong overdue update... have 3 months really gone by since I last posted??
Good things are happening in the food department. It's not a fast or easy process but I am so proud of how far B-man has come and so hopeful for where he's headed.
There was a time when just one bite of something he didn't like would cause him to reject the entire meal. A time when he went for an entire day without eating because we told him he had to have 1 bite of a chicken nugget first. His Mac & Cheese could only be a particular brand. His food had to be cut up and presented in the same way every time or he freaked out and/or refused to eat it.
I won't go into all of the details because it is tedious to say the least. Honestly, I burned out on it before B. ever seemed to. For over 3 months, we have been writing down every single thing he eats and strategically planning every single meal and snack. And he has gotten very little food for "free" without having to try something else first.
We're not quite to what I'd consider "healthy" eating but he is eating a HUGE variety by comparison. And most importantly, he is willing to try practically everything. One of our therapists has taken a particular interest in this program and tries new things every time he works with him... crazy things like tacos, spinach muffins, edamame, dried mango, sunflower seeds. And B. is trying them! Some (oddly enough the spinach muffin) have even become preferred foods. Today, he ate 1/2 of a peanut butter and jelly sandwich for lunch and spinach quiche for dinner. I can't express how extreme of a change this is!
We still have a ways to go but these are great strides and I feel like we'll get there. B LOVES to eat and this opens up a whole new world for him.
Good things are happening in the food department. It's not a fast or easy process but I am so proud of how far B-man has come and so hopeful for where he's headed.
There was a time when just one bite of something he didn't like would cause him to reject the entire meal. A time when he went for an entire day without eating because we told him he had to have 1 bite of a chicken nugget first. His Mac & Cheese could only be a particular brand. His food had to be cut up and presented in the same way every time or he freaked out and/or refused to eat it.
I won't go into all of the details because it is tedious to say the least. Honestly, I burned out on it before B. ever seemed to. For over 3 months, we have been writing down every single thing he eats and strategically planning every single meal and snack. And he has gotten very little food for "free" without having to try something else first.
We're not quite to what I'd consider "healthy" eating but he is eating a HUGE variety by comparison. And most importantly, he is willing to try practically everything. One of our therapists has taken a particular interest in this program and tries new things every time he works with him... crazy things like tacos, spinach muffins, edamame, dried mango, sunflower seeds. And B. is trying them! Some (oddly enough the spinach muffin) have even become preferred foods. Today, he ate 1/2 of a peanut butter and jelly sandwich for lunch and spinach quiche for dinner. I can't express how extreme of a change this is!
We still have a ways to go but these are great strides and I feel like we'll get there. B LOVES to eat and this opens up a whole new world for him.
Monday, July 8, 2013
What other people think
Yesterday, I took the boys to see a movie. This sounds like such a simple, menial thing but when one of your kids has Autism, trust me, it's not. I didn't intend to go it alone. We were going to go as a foursome for a change. But then big brother said he didn't want to see it so it was going to be a date for just me and B which seemed manageable. I was looking at it as a test. We'd see how it went and leave if it wasn't working. After all, it'd been over a year and a half since he'd been to a theater. When we did go to the theater, almost without exception, he'd fall asleep part way through. It might be some sort of response to all of the stimuli. He also used to fall asleep at "school" when he was little. But now he is much too big so there would be no lap sleeping. And also, B. has been totally conditioned to watching just parts of movies. They use them as reinforcement in therapy so he never gets to sit all the way through. He works for a few minutes, watches a few minutes and so on. You can see how this might backfire.
So, as we were packing up to go, big brother had a change of heart and suddenly really, really wanted to see this movie. And Daddy was no longer available to go. I had a big talk with him and told him that we'd have to leave if it didn't work for B. and not to be upset etc. etc. To be honest, I really was trying to talk him out of it. I was pretty confident that a) we would not make it through the whole movie and b) his brother would embarrass the you-know-what out of him and c) I wasn't sure I could handle both of them.
But he wanted to go and it didn't seem fair not to take him so off we went. Well first, I had to pack an entire backpack of "supplies":
-popcorn containers because I knew B. wouldn't be able to share from the same bag and likely wouldn't touch the popcorn at all if it wasn't in his familiar popcorn container
-cups for water because B. does not know how to drink from a water bottle or straw
-a chewie that I HOPED would keep him quiet and busy for at least a little while
-sweatshirts for all in case it was chilly (which came in handy to prop up behind B's back)
-2 stuffed animals for him to play with
-3 packages of fruit snacks that are usually reserved for bribery (ahem - rewards)
-a last resort bag of toys that I thought he might play with if he got bored and ready to leave before the end of the movie
And the backpack was so I could be hands free to keep a firm grasp on each kid's hand. Of course, I didn't factor in the addition of popcorn and water which required both of my hands and a drag along effort on big brother's part.
The parking lot was packed when we got there. I could feel my anxiety rising. Fortunately, it was just the theater as a whole that was busy and our movie wasn't that bad.
I purposefully got us there about 2 minutes before start time so we wouldn't have lost precious attending time from B. before the movie even started. I didn't want to walk in the dark though so it had to be earlier than start time. And still it was FIFTEEN minutes before the actual movie started. I don't get this - kids do not need to see 15 minutes worth of commercials and previews and short films before the actual film you are there to see!
If I could have fed him popcorn for the entire time, we'd have been golden. He munched through 6 refills of his popcorn (probably half a medium sized bag) and was *almost* just like everyone else. The legroom was roomy enough that he could kick his feet and not hit the seat in front of him. So we were good. BUT... there was a family directly in front of us and behind us. As B's noises escalated and when he started quoting a line from the movie Bolt of all things (Bolt, really?), I decided we needed to be considerate and move. I had been eyeing the end of the row because it was completely empty all the way down and even part of the row above it. I whispered to my big kid that we needed to move down. This was a huge gamble. Moving might have made B. think it was time to leave or upset him. And it definitely could have upset big brother. But we did it and it was a saving grace.
From then on, when B. got louder and louder with uncontrollable bursts of laughing, singing, jumping, rocking etc. etc., I felt like we were far enough away from everyone and that the movie was loud enough that he wasn't disrupting anyone else's experience. And after all, it IS a kids movie so you have to expect a bit of noise.
I chose this movie (Monsters University) because B. LOVES Monsters, Inc. He can probably quote or act out the entire movie. Loves the characters, loves the music, loves it! So I figured that might buy me a little bit of his attention. And it might have... tough to say. He did well overall. We worked through all 3 packages of fruit snacks and he asked for more and searched my bag a couple of times. We used the chewie, we used the stuffed animals, he did sit on my lap for about a half an hour (I couldn't see but that's beside the point) and he stood for a little bit too. BUT he didn't try to leave. He was happy to be there. He didn't ruin it for his brother. I think he had fun.
It was a LONG movie for me. I think it was cute but honestly I was so focused on getting through it that I didn't take the whole thing in.
This is a very long winded way of describing what it takes to do the simplest things with a child like B. In a couple of weeks, I am FLYING with them ALONE so you can imagine the planning and preparation THAT will require. I'm officially insane.
It's sad that it takes this much effort to do things like other people. But aside from common courtesy (it really wouldn't have been fair to let B. make noise over the movie directly in another family's ear the whole time), I really was more focused on the experience for B. and his brother. I am learning to care a lot less what other people think. We have just as much right to be there and to get to enjoy the movie and if that enjoyment looks different for B., then that should be okay. He is teaching me that. It's a great lesson for both me and his big brother. I think parts of my life could have been a lot easier if I had learned sooner not to care about what other people thought. But I also want to be a people pleaser and that doesn't compute. I'm not there yet - I have a LOOOOONG way to go but I'm working on it. And B's going to give me lots and lots of practice.
So, as we were packing up to go, big brother had a change of heart and suddenly really, really wanted to see this movie. And Daddy was no longer available to go. I had a big talk with him and told him that we'd have to leave if it didn't work for B. and not to be upset etc. etc. To be honest, I really was trying to talk him out of it. I was pretty confident that a) we would not make it through the whole movie and b) his brother would embarrass the you-know-what out of him and c) I wasn't sure I could handle both of them.
But he wanted to go and it didn't seem fair not to take him so off we went. Well first, I had to pack an entire backpack of "supplies":
-popcorn containers because I knew B. wouldn't be able to share from the same bag and likely wouldn't touch the popcorn at all if it wasn't in his familiar popcorn container
-cups for water because B. does not know how to drink from a water bottle or straw
-a chewie that I HOPED would keep him quiet and busy for at least a little while
-sweatshirts for all in case it was chilly (which came in handy to prop up behind B's back)
-2 stuffed animals for him to play with
-3 packages of fruit snacks that are usually reserved for bribery (ahem - rewards)
-a last resort bag of toys that I thought he might play with if he got bored and ready to leave before the end of the movie
And the backpack was so I could be hands free to keep a firm grasp on each kid's hand. Of course, I didn't factor in the addition of popcorn and water which required both of my hands and a drag along effort on big brother's part.
The parking lot was packed when we got there. I could feel my anxiety rising. Fortunately, it was just the theater as a whole that was busy and our movie wasn't that bad.
I purposefully got us there about 2 minutes before start time so we wouldn't have lost precious attending time from B. before the movie even started. I didn't want to walk in the dark though so it had to be earlier than start time. And still it was FIFTEEN minutes before the actual movie started. I don't get this - kids do not need to see 15 minutes worth of commercials and previews and short films before the actual film you are there to see!
If I could have fed him popcorn for the entire time, we'd have been golden. He munched through 6 refills of his popcorn (probably half a medium sized bag) and was *almost* just like everyone else. The legroom was roomy enough that he could kick his feet and not hit the seat in front of him. So we were good. BUT... there was a family directly in front of us and behind us. As B's noises escalated and when he started quoting a line from the movie Bolt of all things (Bolt, really?), I decided we needed to be considerate and move. I had been eyeing the end of the row because it was completely empty all the way down and even part of the row above it. I whispered to my big kid that we needed to move down. This was a huge gamble. Moving might have made B. think it was time to leave or upset him. And it definitely could have upset big brother. But we did it and it was a saving grace.
From then on, when B. got louder and louder with uncontrollable bursts of laughing, singing, jumping, rocking etc. etc., I felt like we were far enough away from everyone and that the movie was loud enough that he wasn't disrupting anyone else's experience. And after all, it IS a kids movie so you have to expect a bit of noise.
I chose this movie (Monsters University) because B. LOVES Monsters, Inc. He can probably quote or act out the entire movie. Loves the characters, loves the music, loves it! So I figured that might buy me a little bit of his attention. And it might have... tough to say. He did well overall. We worked through all 3 packages of fruit snacks and he asked for more and searched my bag a couple of times. We used the chewie, we used the stuffed animals, he did sit on my lap for about a half an hour (I couldn't see but that's beside the point) and he stood for a little bit too. BUT he didn't try to leave. He was happy to be there. He didn't ruin it for his brother. I think he had fun.
It was a LONG movie for me. I think it was cute but honestly I was so focused on getting through it that I didn't take the whole thing in.
This is a very long winded way of describing what it takes to do the simplest things with a child like B. In a couple of weeks, I am FLYING with them ALONE so you can imagine the planning and preparation THAT will require. I'm officially insane.
It's sad that it takes this much effort to do things like other people. But aside from common courtesy (it really wouldn't have been fair to let B. make noise over the movie directly in another family's ear the whole time), I really was more focused on the experience for B. and his brother. I am learning to care a lot less what other people think. We have just as much right to be there and to get to enjoy the movie and if that enjoyment looks different for B., then that should be okay. He is teaching me that. It's a great lesson for both me and his big brother. I think parts of my life could have been a lot easier if I had learned sooner not to care about what other people thought. But I also want to be a people pleaser and that doesn't compute. I'm not there yet - I have a LOOOOONG way to go but I'm working on it. And B's going to give me lots and lots of practice.
Wednesday, June 12, 2013
Time to Testify
Tomorrow night, hubby and I get to go speak to the chamber of commerce and beg for funding to cover B's therapy. The insurance mandate passed (woo hoo!) but we are part of a loophole and our coverage is still in jeopardy. Can I tell you how much I do not want to do this? I'd rather do just about anything than speak in any type of a public setting. It's just too important not to. Here's my spiel:
My name is (me) and this is my husband. Our
son B. was diagnosed with Autism when he was just 2 years old.
We have 2 boys who are 15 months apart. B is our
youngest. He was and is the happiest kid you’ll ever meet. His laugh is
infectious. But he is not like other kids. At the time of his diagnosis, we
were told that he functioned at the level of a 3-6 month old – a full 2 years
behind in development. He constantly jabbered but he had no functional
language. Not only was he unable to express himself, but he seemed to have no
understanding of anything we said to him. In the community, he would bolt with
no regard for his safety. One of our most terrifying experiences was when he
wandered off at an amusement park and was lost for what was only a few minutes
but seemed like an eternity. We were very fortunate to find him nearby as he
would not have known that he was lost, could not have asked for help and
wouldn’t even respond to his name if called. It was terrifying to have such a
vulnerable child and we feared for his future and the future of our family.
We were told by every medical professional we met that we
needed to get him early intervention therapy as soon as possible and that it
was the only proven therapy to address his needs.
And then we were told that this therapy was not covered by
insurance, was very expensive and that we would have to jump through hoops to
get it. In as expedited a manner as possible, we were able to get started in
intensive ABA therapy. It took 8 months. And in that excruciating waiting
period, we tried our only other alternative for treatment which was Special Ed
services through the school district where his development stalled at best.
We are now in our third year of ABA and B is not the
same kid. Today, he is fully potty
trained and able to perform the same self-care rituals as his older brother.
His receptive language has grown leaps and bounds and he can understand and
follow commands. His speech is still significantly delayed but he is able to
communicate his wants and needs with simple requests and has shown tremendous
potential for reading and typing. He has already exceeded his brother in
learning sight words and we have great hope for how this can help him find his
voice in the future.
We initially used TEFRA (Medical Aid) to help pay for this
essential therapy. But when my husband became self-employed, our parental fee
TRIPLED to a monthly payment that exceeded our mortgage. His income is variable
and my full-time job is taking care of our kids so this is not a sustainable
price for our family. I’m not sure that it’s attainable for any family. We looked to MCHA and for 6 months, we paid
the steep TEFRA fee and the MCHA premium AND the monthly premium for our
private insurance plan for the other members of our family. After the 6-month
waiting period, we were able to drop our TEFRA coverage but we still pay for
MCHA and very pricey private insurance.
You can’t put a cost on this kind of benefit. Without it,
our son’s future and our family’s future is grim. But we can only sacrifice so
much and there comes a point when the money is simply not available. Without
MCHA, we don’t have another viable option.
Unfortunately, the Affordable Care Act seemingly makes this
coverage unnecessary since our child can no longer be denied insurance because
of his diagnosis. We are told that MCHA is going away because we don’t need it
anymore. This is simply not true. Insurance companies continue to deny coverage
of the ABA treatment we depend on and at this point, the ACA does not cover
intensive ABA. Therefore MCHA is still necessary until ObamaCare includes
behavioral health treatment. If MCHA
goes away before families like us have other viable insurance, the consequences
are very, very high. Without it, the state will have to use Medicaid to pay for
this treatment which will cost taxpayers much more and will be unaffordable for
many who desperately need it.
But it’s more than money – it’s the future for these kids
and their families. And it’s even bigger than that. The state as a whole will
be greatly impacted by every child who is denied the treatment that could
enable them to become a contributing member of our community rather than a
drain on our taxpaying dollars.
Please confirm MCHA’s commitment to cover ABA and other
autism treatments until they are included in Minnesota’s ACA essential health
benefits set. The stakes are simply too
high. Thank you for your time and attention.
Tuesday, June 11, 2013
Man V. Food - take 2
We've started up a food tolerance program for B again. The other one fizzled out because he started refusing to try anything and then he had a mystery illness for 3 weeks and we didn't want to mess with him.
But here we go again. We're a week in and I don't want to jinx it but it's going well so far. It's hard core - all or nothing. Here's how it goes:
If B wants to eat ANYTHING, he has to try a bite of something else first (some things he's had before but doesn't eat and some brand new stuff)
We don't offer him food on any type of meal schedule. He has to indicate that he's hungry so we know he's really motivated. Today he didn't eat anything until 11:30 a.m.
He has 5 minutes to eat the bite in front of him. If he doesn't do it, we take away the food he requested. He can have additional chances with new foods to try if he "asks" for the food again.
Last time, we just tried to reserve the really, really preferred things like cookies, cupcakes etc. to get him try something new. But he's a smart kid. He figured out that he'd still get the meals he liked (pizza anyone?) so he could just hold out and refuse whatever we offered.
So now it's all or nothing. There have been tears. Defiance. Hunger. It sometimes took 3 tries before he ever got the meal he wanted (yes, reheated 3 times at that point). And on Friday, he ate lunch and then never got another thing to eat until late the next morning.
As a parent, it is excruciating to deny your child something as fundamental as food. It takes "doing it for your own good" to a whole other level.
But this is what it takes for B. All or nothing. No easy way out. His will is so very strong. And he won't just do this on his own or outgrow his pickiness the way some (most) kids do. We were on a slippery slope and it wasn't much of a stretch to imagine a day where he ate only 1 or 2 foods. And when it comes down to it, we'd rather have a few days (weeks, months?) of the tough stuff than a lifetime of terrible nutrition.
I'm happy to report that he has been successful with more than 20 attempts - 100% success since saturday. Today, he tried dried pineapple and a banana chip. If we could introduce fruit and vegetables into his diet, it'd be a huge win. We have a LOOOOONG way to go. A long, painstaking journey for both us and the little man.
So there you have it. If I look a little more frazzled than normal, you know why. It's a fun project to tackle now that school is out and we're on "vacation". How's your summer?
But here we go again. We're a week in and I don't want to jinx it but it's going well so far. It's hard core - all or nothing. Here's how it goes:
If B wants to eat ANYTHING, he has to try a bite of something else first (some things he's had before but doesn't eat and some brand new stuff)
We don't offer him food on any type of meal schedule. He has to indicate that he's hungry so we know he's really motivated. Today he didn't eat anything until 11:30 a.m.
He has 5 minutes to eat the bite in front of him. If he doesn't do it, we take away the food he requested. He can have additional chances with new foods to try if he "asks" for the food again.
Last time, we just tried to reserve the really, really preferred things like cookies, cupcakes etc. to get him try something new. But he's a smart kid. He figured out that he'd still get the meals he liked (pizza anyone?) so he could just hold out and refuse whatever we offered.
So now it's all or nothing. There have been tears. Defiance. Hunger. It sometimes took 3 tries before he ever got the meal he wanted (yes, reheated 3 times at that point). And on Friday, he ate lunch and then never got another thing to eat until late the next morning.
As a parent, it is excruciating to deny your child something as fundamental as food. It takes "doing it for your own good" to a whole other level.
But this is what it takes for B. All or nothing. No easy way out. His will is so very strong. And he won't just do this on his own or outgrow his pickiness the way some (most) kids do. We were on a slippery slope and it wasn't much of a stretch to imagine a day where he ate only 1 or 2 foods. And when it comes down to it, we'd rather have a few days (weeks, months?) of the tough stuff than a lifetime of terrible nutrition.
I'm happy to report that he has been successful with more than 20 attempts - 100% success since saturday. Today, he tried dried pineapple and a banana chip. If we could introduce fruit and vegetables into his diet, it'd be a huge win. We have a LOOOOONG way to go. A long, painstaking journey for both us and the little man.
So there you have it. If I look a little more frazzled than normal, you know why. It's a fun project to tackle now that school is out and we're on "vacation". How's your summer?
Tuesday, May 21, 2013
When giving your all still isn't enough
6-month review today. Otherwise known as sucker-punch day. We are almost 3 years into this therapy, which is hard to believe. We had a couple of good... GREAT reviews early on. We thought we were tracking toward best outcome where B would actually "recover" and lose his Autism diagnosis. We found hope. And then we didn't. And today we got another tough pill to swallow.
They started with the positive. B has made remarkable strides in his therapy. He is learning and progressing. Slowly but surely. He can learn. But he is having to be taught every little minute thing. And everything is having to be broken down further. He doesn't generalize things and he doesn't learn a lot on his own.
Then we looked at his overall scores relative to his peers. Less than a month of development for each month of therapy for the last year. He is at a developmental level of a 27 month old and he is 5 and a half. 40 plus hours of therapy every week. 4-5 hours of parent training every week. 2-3 hours of Mom/Brady therapy sessions. 2 weekly planning/progress meetings. 6-8 people in our home ALL. THE. TIME. Thousands AND thousands of dollars. Absolute and total devotion to this therapy and our boy. Sacrifices. Stress. How can this be?
We were told that we are likely looking at about another year and a half of this intense ABA therapy and then we need to figure out what's next. And during this next year and a half, we should switch our focus... no longer strive for "recovery" but for what will best improve his and our quality of life.
How do we do this? How do we stop hoping and dreaming for our little boy's future? How do we accept that he may never live independently? That he may never have friends? That he may never even functionally communicate?
Rhetorical questions. I wish I knew.
They started with the positive. B has made remarkable strides in his therapy. He is learning and progressing. Slowly but surely. He can learn. But he is having to be taught every little minute thing. And everything is having to be broken down further. He doesn't generalize things and he doesn't learn a lot on his own.
Then we looked at his overall scores relative to his peers. Less than a month of development for each month of therapy for the last year. He is at a developmental level of a 27 month old and he is 5 and a half. 40 plus hours of therapy every week. 4-5 hours of parent training every week. 2-3 hours of Mom/Brady therapy sessions. 2 weekly planning/progress meetings. 6-8 people in our home ALL. THE. TIME. Thousands AND thousands of dollars. Absolute and total devotion to this therapy and our boy. Sacrifices. Stress. How can this be?
We were told that we are likely looking at about another year and a half of this intense ABA therapy and then we need to figure out what's next. And during this next year and a half, we should switch our focus... no longer strive for "recovery" but for what will best improve his and our quality of life.
How do we do this? How do we stop hoping and dreaming for our little boy's future? How do we accept that he may never live independently? That he may never have friends? That he may never even functionally communicate?
Rhetorical questions. I wish I knew.
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