xmas 2013
Sunday, July 29, 2012
He makes me laugh
B is potty trained. The only issue we've had is that he will occasionally wait to be told to go. We've had days where he has gone 6-8 hours. He seems to think that he has to be told since let's face it, he is told just about everything else he has to do. Anyway, we used to have a system where we would periodically reinforce him for going on his own to increase the likelihood of independence. We really haven't had to do it in quite some time and it has fallen by the wayside a bit. So today, he went on his own and I decided to just randomly give him an oreo for it. Not two minutes later, he was back on the pot. He hopped off and ran to the cabinet. And I kid you not, he was laughing at me. I DID give him another cookie but it just totally cracked me up. If he had simply come up to me and asked for a cookie, I would've given it to him but somehow in his mind, this made more sense. Gotta love him.
Friday, July 27, 2012
7-27
Today's moments were mostly about my almost-6 year old as we celebrated his bday with a Pump It Up party and a dozen of his friends. This was his first real bday party and he had a blast. Pretty awesome.
As for B, it was awesome to see him jumping right in and playing alongside everyone else. He too had a blast and was so much less work than he has been at bday parties in the past. He still needed extra attention (thank you to the world's greatest PCA), but he did amazing overall.
It was a good day.
As for B, it was awesome to see him jumping right in and playing alongside everyone else. He too had a blast and was so much less work than he has been at bday parties in the past. He still needed extra attention (thank you to the world's greatest PCA), but he did amazing overall.
Thursday, July 26, 2012
Moments
Wow - It has been entirely too long since I've posted anything. I have sat down at least a half a dozen times but I think I was waiting for something "big" to post. For that "a-ha" moment where everything clicks and we have figured out the secret to getting B. back on track. And well, we're just not there yet. And that's not to say we haven't been trying. We have been experimenting like crazy and making lots of changes including adding twice weekly OT to the mix, lots of new staff and dramatically different approaches to his therapy.
We've learned some things along the way. 1) B is NOT anti-people (yay!). He is anti-working for people. This is easier to handle. He truly wants to be engaged with us - he just doesn't want us to continuously place demands. Understandable? I think so. 2) B does not like to fail. The sweet spot for success with programs is typically somewhere around 80%. That keeps the kids challenged but motivated. For B, it has to be somewhere closer to 90-95% or he gives up all together.
We're working on it. We are much better off than where we were before. He is no longer apathetic. He definitely cares and is motivated a lot of the time. The self stimulatory behaviors do continue to interfere though so we're dealing with that.
It's a challenging time. But when I stop trying so hard to focus on the big picture, I am reminded of these little moments of glory that happen almost every single day. Yesterday, B hurt himself and he sought me out, said "owie" over and over, and clung to me like a monkey for over 20 minutes. Whenever I'd remove even part of my embrace, he'd replace it. He needs me. He loves me. We don't even need language to know it. How lucky am I to be his mom?
So for now, I think I need to focus on these little moments. That's my goal. I'm going to attempt to log them at least every couple of days. I'm going to *try* not to stress so much about the long-term and soak up and savor all of the beautiful moments that are happening right now. And maybe (hopefully) the long-term picture will begin to fall into place.
Here is one of today's moments. Little B singing "Go away Big Green Monster". His self-stim behaviors are very present but I love it just the same.
http://youtu.be/X8kkQ8Dz8Eg
We've learned some things along the way. 1) B is NOT anti-people (yay!). He is anti-working for people. This is easier to handle. He truly wants to be engaged with us - he just doesn't want us to continuously place demands. Understandable? I think so. 2) B does not like to fail. The sweet spot for success with programs is typically somewhere around 80%. That keeps the kids challenged but motivated. For B, it has to be somewhere closer to 90-95% or he gives up all together.
We're working on it. We are much better off than where we were before. He is no longer apathetic. He definitely cares and is motivated a lot of the time. The self stimulatory behaviors do continue to interfere though so we're dealing with that.
It's a challenging time. But when I stop trying so hard to focus on the big picture, I am reminded of these little moments of glory that happen almost every single day. Yesterday, B hurt himself and he sought me out, said "owie" over and over, and clung to me like a monkey for over 20 minutes. Whenever I'd remove even part of my embrace, he'd replace it. He needs me. He loves me. We don't even need language to know it. How lucky am I to be his mom?
So for now, I think I need to focus on these little moments. That's my goal. I'm going to attempt to log them at least every couple of days. I'm going to *try* not to stress so much about the long-term and soak up and savor all of the beautiful moments that are happening right now. And maybe (hopefully) the long-term picture will begin to fall into place.
Here is one of today's moments. Little B singing "Go away Big Green Monster". His self-stim behaviors are very present but I love it just the same.
http://youtu.be/X8kkQ8Dz8Eg
Thursday, June 7, 2012
We will not go down without a fight
I wish it was yesterday. I wish we could just sort of erase that today ever happened. It wouldn't be any different but at least we could still keep plugging along believing that we were still tracking toward the best possible outcome for our little man. Now we have new information and everything feels different. Almost like it did when we officially found out that B had Autism. He was the same kid yet everything was different. Today was our 6-month review of Brady's progress in therapy and let's just say it wasn't what we hoped for. I feel a bit sucker-punched and deflated.
B has had a tough couple of weeks - maybe even a couple of months. I blogged about it recently. We've been struggling with motivation which is the whole key to this kind of therapy. If we can't motivate him, he can't learn. Additionally, his Autism seems to be taking over in a big way. His stereotyped behaviors are more prevalent than ever and there seem to be new ones every day. The vast majority of his time is spent "stimming" and it's clearly what he would prefer to do. There are times when I just can not get through to him at all. He seems to be slipping farther and farther away from us.
Just this week, we started a somewhat radical change in his therapy schedule. It feels like he is bored and kind of over the whole thing. And when we step back, we can't really blame him. In August, it will be 2 years of this. Two years of 40+ hours per week spent in therapy, almost exclusively in our home. Sometimes a week (sometimes more) will go by and he has never even left the house. He knows the drill, he knows the people, he knows what they can and can't do for him and he seems sick of it. Truly, who wouldn't be? So we knew we had to do something to shake things up. We've tried a couple of tactics unsuccessfully and now we're decreasing the hours of intensive, academic type learning and trying to build in more "natural" teaching time and outings. Easier said than done but here we go.
The review is complicated and we're still digesting but after such a positive report 6 months ago, this is disheartening to say the least. B is still making progress but it's slow. He isn't accelerating at the rate he was before. Initially, this doesn't feel like the hugest deal in the world because hey, at least he isn't losing any skills. It does, however, change everything. They are no longer predicting best outcomes. In fact, the discussion was about whether it will make sense to continue this therapy if he continues at this pace. This is the most expensive, most intensive, most disruptive, stressful therapy we could possibly do. So the payoff has to be huge. It appears that he isn't "learning how to learn" as we'd hope. He can be taught but he isn't learning incidentally - every little minute thing is having to be broken down for him and taught. He is still at about a 2-year old developmental level and he will be 5 in November. So obviously, he would never overcome his disabilities if he continues along this path. In 6 months time, we have gone from planning a "normal" life and starting kindergarten in another couple of years to adjusting to the idea of a child who will be dependent on us for the rest of his life.
I also was given a bonus 2 hours of therapy time to reward me for all of my efforts. I currently do 5 hours in addition to 2.5 hours of meetings every week. When we first started, they asked 10 and it was unmanageable. Seven will be a struggle too. I was just getting to a place where I felt like I had a bit more balance in my life. I would do absolutely anything for B but it is not easy to find the motivation without the reward.
I'm still digesting the data. This is all so complex. And we still haven't gotten our report back from the external review 2 months ago that seemed so positive at the time. Maybe it isn't as bleak as it seemed. I knew he had a rough couple of weeks but I expected the 6 month interval as a whole to still be positive.
In 6 months time, everything changed. So it can change again. It has to. But still, I wish it was yesterday.
B has had a tough couple of weeks - maybe even a couple of months. I blogged about it recently. We've been struggling with motivation which is the whole key to this kind of therapy. If we can't motivate him, he can't learn. Additionally, his Autism seems to be taking over in a big way. His stereotyped behaviors are more prevalent than ever and there seem to be new ones every day. The vast majority of his time is spent "stimming" and it's clearly what he would prefer to do. There are times when I just can not get through to him at all. He seems to be slipping farther and farther away from us.
Just this week, we started a somewhat radical change in his therapy schedule. It feels like he is bored and kind of over the whole thing. And when we step back, we can't really blame him. In August, it will be 2 years of this. Two years of 40+ hours per week spent in therapy, almost exclusively in our home. Sometimes a week (sometimes more) will go by and he has never even left the house. He knows the drill, he knows the people, he knows what they can and can't do for him and he seems sick of it. Truly, who wouldn't be? So we knew we had to do something to shake things up. We've tried a couple of tactics unsuccessfully and now we're decreasing the hours of intensive, academic type learning and trying to build in more "natural" teaching time and outings. Easier said than done but here we go.
The review is complicated and we're still digesting but after such a positive report 6 months ago, this is disheartening to say the least. B is still making progress but it's slow. He isn't accelerating at the rate he was before. Initially, this doesn't feel like the hugest deal in the world because hey, at least he isn't losing any skills. It does, however, change everything. They are no longer predicting best outcomes. In fact, the discussion was about whether it will make sense to continue this therapy if he continues at this pace. This is the most expensive, most intensive, most disruptive, stressful therapy we could possibly do. So the payoff has to be huge. It appears that he isn't "learning how to learn" as we'd hope. He can be taught but he isn't learning incidentally - every little minute thing is having to be broken down for him and taught. He is still at about a 2-year old developmental level and he will be 5 in November. So obviously, he would never overcome his disabilities if he continues along this path. In 6 months time, we have gone from planning a "normal" life and starting kindergarten in another couple of years to adjusting to the idea of a child who will be dependent on us for the rest of his life.
I also was given a bonus 2 hours of therapy time to reward me for all of my efforts. I currently do 5 hours in addition to 2.5 hours of meetings every week. When we first started, they asked 10 and it was unmanageable. Seven will be a struggle too. I was just getting to a place where I felt like I had a bit more balance in my life. I would do absolutely anything for B but it is not easy to find the motivation without the reward.
I'm still digesting the data. This is all so complex. And we still haven't gotten our report back from the external review 2 months ago that seemed so positive at the time. Maybe it isn't as bleak as it seemed. I knew he had a rough couple of weeks but I expected the 6 month interval as a whole to still be positive.
In 6 months time, everything changed. So it can change again. It has to. But still, I wish it was yesterday.
Tuesday, May 29, 2012
Rough patch
B is challenging us lately. On many levels. He has been nearly impossible to motivate and his self stimulatory behaviors have been even harder to control. There have been numerous therapy sessions where we've had to stop running programs all together and just try to engage him. He has either given up or is just completely checked out. Hubby thinks he's bored. Our team thinks he has just caught on to this whole gig and figured out how to get out of it. It's probably a combination of the two. But to say that it's disconcerting would be an understatement. It's distressing, disturbing and scary. We all have a LOT invested here. I keep hearing that it's good for kids to push back. Those with the best outcomes typically do fight back from time to time. It's far, far better than apathy. At least that's what I keep telling myself.
Our team is on it. We have some elaborate plans to try to reign him in. In the meantime, the best way for me to describe it is draining. I'm more than tired. I am completely drained of energy. Parenting a child with autism is no picnic. There is nothing intuitive about it - most of the time, we are instructed to do the exact opposite of what we want to. Every single thing we do with or for B requires an elaborate thought process. And it's every waking minute of every day. Most people would say that parenting in general is a hard job. I don't mean any disrespect to fellow parents but truly, you have no idea. Here's hoping he turns it around soon.
On a bright note, we have made some gains in the food department. Our picky, restricted eater has tried quite a few new things lately. We tried to do a structured approach in therapy but it backfired. With a more relaxed approach, he has sampled all of the following lately:
a turkey/swiss grilled sandwich
jelly beans
chocolate covered raisins
cinnamon coated almonds
2 new yogurt brands
a couple of new cereals
gorgonzola crackers
gatorade
gummy vitamins that he shunned for the last year
pizza from a new place
There may be a couple I'm forgetting. Yes, I know that most of these are not high on the nutritional charts but we are talking about a kid who literally only eats about a dozen foods. Progress is progress.
Our team is on it. We have some elaborate plans to try to reign him in. In the meantime, the best way for me to describe it is draining. I'm more than tired. I am completely drained of energy. Parenting a child with autism is no picnic. There is nothing intuitive about it - most of the time, we are instructed to do the exact opposite of what we want to. Every single thing we do with or for B requires an elaborate thought process. And it's every waking minute of every day. Most people would say that parenting in general is a hard job. I don't mean any disrespect to fellow parents but truly, you have no idea. Here's hoping he turns it around soon.
On a bright note, we have made some gains in the food department. Our picky, restricted eater has tried quite a few new things lately. We tried to do a structured approach in therapy but it backfired. With a more relaxed approach, he has sampled all of the following lately:
a turkey/swiss grilled sandwich
jelly beans
chocolate covered raisins
cinnamon coated almonds
2 new yogurt brands
a couple of new cereals
gorgonzola crackers
gatorade
gummy vitamins that he shunned for the last year
pizza from a new place
There may be a couple I'm forgetting. Yes, I know that most of these are not high on the nutritional charts but we are talking about a kid who literally only eats about a dozen foods. Progress is progress.
Thursday, May 17, 2012
Mac N Cheese with a fork!
Monday, April 16, 2012
Proof that ABA works
A little over a week ago, we had B evaluated by another autism therapy provider. We are required to do an external evaluation annually to show our funding company the results (from someone other than the team we are paying). It takes a few weeks to get the report but I can say that the results were very positive. B has made some very big gains particularly in language. His receptive language went from that of a 3 month old to THIRTY months in one year! And his expressive language went from the equivalent of a 10-month old to 27 months. This stuff really works.
And, as further proof, here is a video taken yesterday of B singing the ABCs and one taken just over a year ago. He is so much clearer now. We're hoping to add speech therapy into the mix here soon and see if we can keep bumping him up.
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