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.
xmas 2013
Tuesday, May 21, 2013
Friday, May 3, 2013
Not that pumped about Pump It Up
After unfortunately having to cancel a weekend trip to visit family, we were left with some therapy-free time. I thought it'd be a nice "treat" to take the boys to the drop-in playtime at Pump It Up this afternoon. This is a place we go semi-regularly. I'd say we've been at least a dozen or more times. And B LOVES it! Any place that involves bouncing is paradise for him. However, it has always been a place that I felt more comfortable having a 1:1 ratio since the boys tend to go in different directions and it's usually loud and busy. Our PCA used to take B. sometimes and he even went during therapy sessions a couple of times.
The last time I went (probably a month or 2 ago), it was glorious. I decided to brave it since a second set of hands is a rare thing anymore. And to my surprise, it could not have gone better. The boys had a blast and B shocked and impressed me by doing all of the obstacle courses on his own and seeming so comfortable there. For once, I didn't have to be completely on guard the whole time and I think I may have even sat down for a bit.
Today didn't go as swimmingly. It was pretty empty when we got there and the boys were super excited - B. practically sprinted in the door. But right off the bat, B went to the obstacle course and sort of got stuck once he got to the wall you climb to go down a big slide. You are not supposed to go the other way out of the course and it's pretty tough to go in after them. Big brother tried. He went in and tried to coax B. through it but he just couldn't. B. seemed like he was trying to psych himself up because he'd start back and then go to the wall again as if he was going to give it a shot. Ultimately, I lifted him up over the side and we moved on. For a few blissful minutes, the boys jumped happily in the bouncy house.
Then came the slide.
I tried to be proactive. As B. started heading that way, I went up to the woman working there and told her that he has Autism and isn't really able to understand how to use the mats to go down the slide so is it okay if he just goes down without one? This is something he has done confidently probably about a hundred times. In what I'm sure was not as intentionally condescending as it sounded, she said she'd have to go talk to the owner. And when she came back (after B. snuck up and down the slide a time or two), she said "I'm so sorry but it's corporate policy and it's a safety issue and he has to use a mat". So I told her I would do the best I could but the reason I said anything to her in the first place was so that she'd be aware when he ran up the slide and didn't seem to listen to instruction. From that point on, I was on high guard. Since I really couldn't do anything to get him to do the slide the "right" way, I just tried everything in my power to keep him away from the slide. All the while attempting to pay attention to my sweet 6 year old who wanted and needed me to see what he was doing too. The best thing I could come up with was to take off my shoes and jump alongside them so at least I could keep them both in one place. This worked for a few minutes. Then B. headed to the slide and since the helpful employee told me that I was welcome to go on the equipment with him, I decided to try that approach. In doing so, I had to also promise my other son that I would take one ride with him too. I grabbed a mat and went to the top. But when we got there, B. took off down the slide before I had time to put him on my lap. And then he tried to figure out how to get back UP the slide to me. So for what felt like an eternity, I sat at the top of the slide yelling to him and trying to get him to understand that he had to move out of the way before I could come down. Then I had the issue of the promised ride with my older son. I try extremely hard not to break promises to him. So we did it quickly and I held my breath hoping that B. wouldn't do anything in the couple of seconds he was out of my sight. Of course, he did go into the next room when the whistle went off and my heart sank while we ran after him.
Aside from B. getting out of my sight (which is always terrifying), I was actually relieved when we got the whistle cue to switch to the other room. Oh but first the ever-so-helpful employee singled me out to see if my son was going to be bothered by the sound of a whistle. Yes, I know - this is actually a very considerate and nice gesture but it just made me feel even more different in a place where we were trying to fit in with everyone else.
Once everyone was safely in the next room, I was paying attention to big brother for a minute and B. took off on the big slide in that room. Helpful employee #1 came over to me and said "I'm sorry - I'm not worried about the mat but he isn't holding on to the ropes when he goes up and it's really a safety issue." She didn't know if maybe there was a way that "I could communicate to him to hold on".Yes, yes of course there is. I have a special language that only I speak and I CAN get him to follow all of the rules - I just choose not to. If only she knew how much that comment hurt me. Just how painful it was to me at that moment that I simply could not make my own child understand. I told her I was doing the best that I could and I would try to keep him away or to go with him. I asked her WHY they are so insistent on using the mats when they only make kids go faster which seems less safe in my humble opinion. And she claimed it ensures a straighter, safer ride. Whatever. She mentioned that they do "special nights" for kids on the spectrum and seemed flabbergasted when I said that I thought that environment would actually be harder on both of my kids. The helpful suggestion also sounded very much like we weren't that welcome to be there this afternoon. And I get it. I know it must be hard for them to have to enforce the rules to the other kids when somebody else is sneaking past them and not having to play by the same rules. I was just in a really tough spot. I do keep in mind the needs of the other kids. We went at a time that wasn't busy. We practiced this dozens of times before I ever attempted it on my own and I wasn't letting B. do anything that I knew he wouldn't be able to do. I knew that he would not push anyone and wouldn't go down at the same time as anyone else. And I knew that he was absolutely capable of going up the steps holding on to the sides and not the rope. But let me tell you, B. is FAST, STRONG and DETERMINED. I went up with him several times and most of the time, it backfired. Boy did I try. At one point, there was a tiny bit of a line and I had to literally pull him out of it and hold him down. All the poor boy wanted to do was go down that slide.
Helpful employee #2 came over to give me a pep talk at one point. After asking me if I was a "teacher" and seeming surprised that I was the mom, he told me all about his friend's kid who had SIDS and then it turned into autism. Which is so stupid on so many levels. Aside from the fact that SIDS actually means infant DEATH syndrome so can't become anything else, just the idea that autism can be something contracted like a disease is idiotic.
After trying to coax B. to do the obstacle courses and avoid the slide, it was time to call it a day. I was disappointed that he wouldn't do the courses he had done so successfully before. And I was sore and beaten down. I pulled my neck and wrist with my acrobatic attempts to reign in the crazy slide activities. I'm apparently too old for this.
One final blow as we were leaving: helpful employee #1 followed us out to the lobby and said "I just want to say thank you for all your help and for coming today". Again, I'm sure she was trying to be nice but I felt deflated. I felt different. I felt pitied. And I felt like we didn't belong there.
It's a double-edged sword, I know. I have a hard time when people make special accommodations for B. because I want so desperately for him to have some experiences like other kids. It's painful to me when people treat him or us with pity. And yet it's also painful when people unknowingly try to carry on a conversation that I know he will not be able to participate in. You can't win. I recognize this. So please don't be afraid to talk to him or me. I know people do the best they can. It's just painful. I left with a sore body and tears in my eyes but trying to talk to my big kid and make sure that he had fun. It's not easy on him either. Still, as bad as I felt after today, I thought about my boy. How much worse it must be for him. Literally NO ONE understands him. EVER. Even his own parents who love him more than we thought humanly possible can not figure out what he needs most of the time. He must feel like I did today times about a million. My sweet, sweet boy. Why does it have to be so hard?
The last time I went (probably a month or 2 ago), it was glorious. I decided to brave it since a second set of hands is a rare thing anymore. And to my surprise, it could not have gone better. The boys had a blast and B shocked and impressed me by doing all of the obstacle courses on his own and seeming so comfortable there. For once, I didn't have to be completely on guard the whole time and I think I may have even sat down for a bit.
Today didn't go as swimmingly. It was pretty empty when we got there and the boys were super excited - B. practically sprinted in the door. But right off the bat, B went to the obstacle course and sort of got stuck once he got to the wall you climb to go down a big slide. You are not supposed to go the other way out of the course and it's pretty tough to go in after them. Big brother tried. He went in and tried to coax B. through it but he just couldn't. B. seemed like he was trying to psych himself up because he'd start back and then go to the wall again as if he was going to give it a shot. Ultimately, I lifted him up over the side and we moved on. For a few blissful minutes, the boys jumped happily in the bouncy house.
Then came the slide.
I tried to be proactive. As B. started heading that way, I went up to the woman working there and told her that he has Autism and isn't really able to understand how to use the mats to go down the slide so is it okay if he just goes down without one? This is something he has done confidently probably about a hundred times. In what I'm sure was not as intentionally condescending as it sounded, she said she'd have to go talk to the owner. And when she came back (after B. snuck up and down the slide a time or two), she said "I'm so sorry but it's corporate policy and it's a safety issue and he has to use a mat". So I told her I would do the best I could but the reason I said anything to her in the first place was so that she'd be aware when he ran up the slide and didn't seem to listen to instruction. From that point on, I was on high guard. Since I really couldn't do anything to get him to do the slide the "right" way, I just tried everything in my power to keep him away from the slide. All the while attempting to pay attention to my sweet 6 year old who wanted and needed me to see what he was doing too. The best thing I could come up with was to take off my shoes and jump alongside them so at least I could keep them both in one place. This worked for a few minutes. Then B. headed to the slide and since the helpful employee told me that I was welcome to go on the equipment with him, I decided to try that approach. In doing so, I had to also promise my other son that I would take one ride with him too. I grabbed a mat and went to the top. But when we got there, B. took off down the slide before I had time to put him on my lap. And then he tried to figure out how to get back UP the slide to me. So for what felt like an eternity, I sat at the top of the slide yelling to him and trying to get him to understand that he had to move out of the way before I could come down. Then I had the issue of the promised ride with my older son. I try extremely hard not to break promises to him. So we did it quickly and I held my breath hoping that B. wouldn't do anything in the couple of seconds he was out of my sight. Of course, he did go into the next room when the whistle went off and my heart sank while we ran after him.
Aside from B. getting out of my sight (which is always terrifying), I was actually relieved when we got the whistle cue to switch to the other room. Oh but first the ever-so-helpful employee singled me out to see if my son was going to be bothered by the sound of a whistle. Yes, I know - this is actually a very considerate and nice gesture but it just made me feel even more different in a place where we were trying to fit in with everyone else.
Once everyone was safely in the next room, I was paying attention to big brother for a minute and B. took off on the big slide in that room. Helpful employee #1 came over to me and said "I'm sorry - I'm not worried about the mat but he isn't holding on to the ropes when he goes up and it's really a safety issue." She didn't know if maybe there was a way that "I could communicate to him to hold on".Yes, yes of course there is. I have a special language that only I speak and I CAN get him to follow all of the rules - I just choose not to. If only she knew how much that comment hurt me. Just how painful it was to me at that moment that I simply could not make my own child understand. I told her I was doing the best that I could and I would try to keep him away or to go with him. I asked her WHY they are so insistent on using the mats when they only make kids go faster which seems less safe in my humble opinion. And she claimed it ensures a straighter, safer ride. Whatever. She mentioned that they do "special nights" for kids on the spectrum and seemed flabbergasted when I said that I thought that environment would actually be harder on both of my kids. The helpful suggestion also sounded very much like we weren't that welcome to be there this afternoon. And I get it. I know it must be hard for them to have to enforce the rules to the other kids when somebody else is sneaking past them and not having to play by the same rules. I was just in a really tough spot. I do keep in mind the needs of the other kids. We went at a time that wasn't busy. We practiced this dozens of times before I ever attempted it on my own and I wasn't letting B. do anything that I knew he wouldn't be able to do. I knew that he would not push anyone and wouldn't go down at the same time as anyone else. And I knew that he was absolutely capable of going up the steps holding on to the sides and not the rope. But let me tell you, B. is FAST, STRONG and DETERMINED. I went up with him several times and most of the time, it backfired. Boy did I try. At one point, there was a tiny bit of a line and I had to literally pull him out of it and hold him down. All the poor boy wanted to do was go down that slide.
Helpful employee #2 came over to give me a pep talk at one point. After asking me if I was a "teacher" and seeming surprised that I was the mom, he told me all about his friend's kid who had SIDS and then it turned into autism. Which is so stupid on so many levels. Aside from the fact that SIDS actually means infant DEATH syndrome so can't become anything else, just the idea that autism can be something contracted like a disease is idiotic.
After trying to coax B. to do the obstacle courses and avoid the slide, it was time to call it a day. I was disappointed that he wouldn't do the courses he had done so successfully before. And I was sore and beaten down. I pulled my neck and wrist with my acrobatic attempts to reign in the crazy slide activities. I'm apparently too old for this.
One final blow as we were leaving: helpful employee #1 followed us out to the lobby and said "I just want to say thank you for all your help and for coming today". Again, I'm sure she was trying to be nice but I felt deflated. I felt different. I felt pitied. And I felt like we didn't belong there.
It's a double-edged sword, I know. I have a hard time when people make special accommodations for B. because I want so desperately for him to have some experiences like other kids. It's painful to me when people treat him or us with pity. And yet it's also painful when people unknowingly try to carry on a conversation that I know he will not be able to participate in. You can't win. I recognize this. So please don't be afraid to talk to him or me. I know people do the best they can. It's just painful. I left with a sore body and tears in my eyes but trying to talk to my big kid and make sure that he had fun. It's not easy on him either. Still, as bad as I felt after today, I thought about my boy. How much worse it must be for him. Literally NO ONE understands him. EVER. Even his own parents who love him more than we thought humanly possible can not figure out what he needs most of the time. He must feel like I did today times about a million. My sweet, sweet boy. Why does it have to be so hard?
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