xmas 2013
Tuesday, February 22, 2011
Failed experiment
Well, the "day off" theory didn't really pan out the way I had hoped. I'm listening to B scream and cry as I type. Which, by the way, he has been doing for about the last 2.5 hours. Really, B? You have to do therapy every single day or you totally lose the momentum? That's going to be fun for all of us to keep up for the next 3-4 years.
Monday, February 21, 2011
Snowed in
It has certainly been an intense winter this year. Today, all four of us are home and home "alone" because therapy was canceled due to the weather. It's almost like a vacation day. Hubby is working from home but it feels kind of like our saturdays used to. It's hard to believe that we used to spend days like this. We always had activities - playdates, errands etc. but we did have days here and there where the boys and I never left the house. We don't have that anymore. Our weekends are bizarre, busy and fast-paced now. Saturday is the only day that we don't have anyone extra in our house - no, scratch that - we have our pca here most evenings. Both hubby and I have to do therapy with B on saturdays and it takes up the majority of the day. Then on Sundays, we have a full schedule from 11:30 - 6. Downtime? No. Not so much.
I debated trying to do a little therapy with B. I have all the programming and the training to do it and it might help him stay on track. Instead, I thought it'd be nice to see what a true day "off" does for him. I've wondered if he'd be better off having a full day free of therapy from time to time. We'll see. He's never really "off"... it's not like we just let him do whatever he wants all day with no consequence and no interaction from us. We're still very aware of what he needs to be doing and not doing. But he isn't having to do any ABA trials (i.e. do this and you'll get this).
We've had a good day. Low-key. No major meltdowns (other than the bath which I'm hoping is a stage that will pass). Kind of relaxing. Lots of train and car play for both kids.
Plus, B had a fabulous day yesterday. He is definitely doing so much better with the crying and tantrums. He seems happier and more engaged in general and continues to cruise through his stuff. Phew! So he deserves a little break.
I guess we'll find out tomorrow if it helps or hurts him... that is, of course unless we're completely snowed in again.
I debated trying to do a little therapy with B. I have all the programming and the training to do it and it might help him stay on track. Instead, I thought it'd be nice to see what a true day "off" does for him. I've wondered if he'd be better off having a full day free of therapy from time to time. We'll see. He's never really "off"... it's not like we just let him do whatever he wants all day with no consequence and no interaction from us. We're still very aware of what he needs to be doing and not doing. But he isn't having to do any ABA trials (i.e. do this and you'll get this).
We've had a good day. Low-key. No major meltdowns (other than the bath which I'm hoping is a stage that will pass). Kind of relaxing. Lots of train and car play for both kids.
Plus, B had a fabulous day yesterday. He is definitely doing so much better with the crying and tantrums. He seems happier and more engaged in general and continues to cruise through his stuff. Phew! So he deserves a little break.
I guess we'll find out tomorrow if it helps or hurts him... that is, of course unless we're completely snowed in again.
Monday, February 14, 2011
Better days
Wow - my last post was kind of a downer. Sorry about that - it's tough to be positive all the time around here. We are running a marathon... uphill most of the way... and every day is a test of endurance, of faith, of hope. No one ever said this was going to be easy.
But things are better. I am cautiously optimistic that this new approach is working. B went from 80 something "protests/tantrums" in a week to 40 something. And I think this week will will be even better. He has had a couple sessions where he did not cry once. And when he does cry, it is so short-lived by comparison. The other day, he cried for about 30 seconds and then said "all done" like I always do. What's really cool about it is that he is seeking out the social interaction from the therapists and from me now that he is allowed to have things a little more on his terms. He has been having a lot of fun and I am SO relieved to see it.
That said, I've been worrying a lot about his language/communication skills. It has now been a little over a year since he was first evaluated and his next external evaluations are looming. He has made huge strides, really he has. I'd even go so far as to say that he is a totally different kid. He still really isn't using language in any meaningful way though and that scares me. I keep waiting for it to explode the way it does with "typical kids" or even the way his singing has. He does have a TON more words. He says something like 50 things during each 3-hour session. But he doesn't really use language and it isn't progressing. We still can't rely on him to use a word to indicate his needs or wants. He definitely has progressed with communication as a whole. He can pretty clearly get his point across by bringing us to whatever he wants etc. He just never does it verbally. And he's SUCH a verbal kid too - he jabbers, sings, squeals nonstop. It's frustrating. I still really believe he'll get there but it's going slower than I had hoped. It's a tricky thing because we don't want to frustrate him in any way in an area that is clearly so hard for him. When I discussed this with our team lead, she informed me that it doesn't typically happen in a linear fashion the way it does with neuro-typical kids. I can't expect that he will learn a word, then build to 2 and start forming longer and longer sentences. We really can't predict how (or if) his language will take shape. Now that we hopefully are getting a handle on the crying, maybe we'll be able to concentrate harder on figuring this out with him.
I had a couple of pretty significant glimmers of hope on this topic today though. This afternoon, B started pulling me around the house. He does this all the time - uses me to transition from room to room, to get him food etc. But this time, it was pretty obvious that he didn't want or need anything. I thought he was toying with me - just seeing how much control he has over me. And then he said ever-so-clearly "gonna get you". He was trying to get me to play a game that we play together where he has my hand and I kind of yank him back to me. I repeated it "I'm gonna get you" and he giggled and said "I'm gonna get you" as clearly as if I had said it myself. A verbal request!! And then he closely followed it with "ready, set, go" to request another activity. I sang row, row, row your boat and he sang that a few times too. Being able to engage him verbally is so awesome.
Also today (it was a big day), I pulled out a big book of stickers to try to get him to label some of the familiar objects. And he pointed and said "apples" correctly. He also flipped through a Thomas book and pointed and named the characters. He had done this before and then stopped - instead relying on us to verbally label whenever he pointed. It freaked me out that he was going backwards.
And, big brother and I came home this afternoon with pizza from Costco. He went up to the familiar plate, pulled it to him and said "pizza, pizza".
Watching a Thomas video before bed, he belted out a new song that he hasn't sung before "thomas, we love you".
Independently, these are all big accomplishments. So the fact that he has done all of this in one afternoon is cause for celebration. It may not happen as quickly or easily as I'd like but he is doing amazing things. And for that, I am grateful.
Here's a pic of my little Valentine today. Yep, he's cute.
But things are better. I am cautiously optimistic that this new approach is working. B went from 80 something "protests/tantrums" in a week to 40 something. And I think this week will will be even better. He has had a couple sessions where he did not cry once. And when he does cry, it is so short-lived by comparison. The other day, he cried for about 30 seconds and then said "all done" like I always do. What's really cool about it is that he is seeking out the social interaction from the therapists and from me now that he is allowed to have things a little more on his terms. He has been having a lot of fun and I am SO relieved to see it.
That said, I've been worrying a lot about his language/communication skills. It has now been a little over a year since he was first evaluated and his next external evaluations are looming. He has made huge strides, really he has. I'd even go so far as to say that he is a totally different kid. He still really isn't using language in any meaningful way though and that scares me. I keep waiting for it to explode the way it does with "typical kids" or even the way his singing has. He does have a TON more words. He says something like 50 things during each 3-hour session. But he doesn't really use language and it isn't progressing. We still can't rely on him to use a word to indicate his needs or wants. He definitely has progressed with communication as a whole. He can pretty clearly get his point across by bringing us to whatever he wants etc. He just never does it verbally. And he's SUCH a verbal kid too - he jabbers, sings, squeals nonstop. It's frustrating. I still really believe he'll get there but it's going slower than I had hoped. It's a tricky thing because we don't want to frustrate him in any way in an area that is clearly so hard for him. When I discussed this with our team lead, she informed me that it doesn't typically happen in a linear fashion the way it does with neuro-typical kids. I can't expect that he will learn a word, then build to 2 and start forming longer and longer sentences. We really can't predict how (or if) his language will take shape. Now that we hopefully are getting a handle on the crying, maybe we'll be able to concentrate harder on figuring this out with him.
I had a couple of pretty significant glimmers of hope on this topic today though. This afternoon, B started pulling me around the house. He does this all the time - uses me to transition from room to room, to get him food etc. But this time, it was pretty obvious that he didn't want or need anything. I thought he was toying with me - just seeing how much control he has over me. And then he said ever-so-clearly "gonna get you". He was trying to get me to play a game that we play together where he has my hand and I kind of yank him back to me. I repeated it "I'm gonna get you" and he giggled and said "I'm gonna get you" as clearly as if I had said it myself. A verbal request!! And then he closely followed it with "ready, set, go" to request another activity. I sang row, row, row your boat and he sang that a few times too. Being able to engage him verbally is so awesome.
Also today (it was a big day), I pulled out a big book of stickers to try to get him to label some of the familiar objects. And he pointed and said "apples" correctly. He also flipped through a Thomas book and pointed and named the characters. He had done this before and then stopped - instead relying on us to verbally label whenever he pointed. It freaked me out that he was going backwards.
And, big brother and I came home this afternoon with pizza from Costco. He went up to the familiar plate, pulled it to him and said "pizza, pizza".
Watching a Thomas video before bed, he belted out a new song that he hasn't sung before "thomas, we love you".
Independently, these are all big accomplishments. So the fact that he has done all of this in one afternoon is cause for celebration. It may not happen as quickly or easily as I'd like but he is doing amazing things. And for that, I am grateful.
Here's a pic of my little Valentine today. Yep, he's cute.
Thursday, February 3, 2011
The crying game
I think I'm reaching my breaking point with the crying and tantrums. It has gotten so much worse and I really don't know why. Listening to your baby cry is not something a mom ever gets used to. Knowing that it's all in his best interest, I can be strong and I can take it. To a point. Since we started this, my mantra has been that I/we can do this as long as there are more good days than bad. Well, that really hasn't been the case these last few weeks. Practically every session has been filled with tears. I don't know how much longer I can take it.
It's now at a point where it is interfering with his success. We've got to get a handle on it before it really makes an impact. So we're making some changes. Based on the plentitude of data collected, it appears that the bulk of the crying has to do with B wanting to escape the demands being placed on him. And now we're going to let him. It's complicated but in a nutshell, the team is going to beef up the positive stuff - the play, the reinforcements etc. AND let him "escape" much, much more. It's kind of the complete opposite of what we've been doing thus far. But it's worth a shot. Something has got to change. SOON. I am seriously hoping that he picks up on this quickly and gets back to the days of giddiness and laughter before we both burn out completely.
It's now at a point where it is interfering with his success. We've got to get a handle on it before it really makes an impact. So we're making some changes. Based on the plentitude of data collected, it appears that the bulk of the crying has to do with B wanting to escape the demands being placed on him. And now we're going to let him. It's complicated but in a nutshell, the team is going to beef up the positive stuff - the play, the reinforcements etc. AND let him "escape" much, much more. It's kind of the complete opposite of what we've been doing thus far. But it's worth a shot. Something has got to change. SOON. I am seriously hoping that he picks up on this quickly and gets back to the days of giddiness and laughter before we both burn out completely.
Thursday, January 27, 2011
Poor tired boy
When I came home from a preschool pizza party, this is what I saw. Poor sweet boy - he was supposed to be doing some training time with Daddy from 5:30 - 6:30 and he put himself to sleep right in the middle of the living room floor. I transferred him to his bed and he hasn't made a peep. It's easy to forget but after all, he is only 3.
Wednesday, January 26, 2011
Under the weather
Poor little B has been sick. It's always hard when your little one is suffering. What makes it particularly hard with B though is deciding whether or not he is fighting therapy because he doesn't feel well or if he just doesn't want to cooperate. It's tough to be black and white with this one.
On Monday, he seemed perfectly normal when I left to take big brother to get a cavity filled and for our "mommy date". When we came home around 12:30, B was asleep on the babysitter with a 101 temp. So, he got a nap and some motrin and the afternoon "off" from therapy. When he woke up, he was fine and ate a normal dinner etc. But around 6 pm, he just wanted to snuggle and ended up falling asleep in my arms for another 45 minute nap. We canceled his next morning therapy session but kept the afternoon one from 2:15 - 6 on schedule. He struggled through it but not really any more than a lot of his sessions.
And that brings us to today. I had to wake him at 8:15 (really late for him) and he was clingy but had no fever or symptoms. I was worried to leave him but gave him a dose of motrin to be on the safe side and headed out. I called after an hour and was told he was doing okay. Needless to say, I was really anxious to see him when we came home at 1. Unfortunately, he was crying in the basement when we came in so I had to refrain. For almost an hour, I listened to him sob. We made lunch and a batch of cupcakes and tried to be distracted. Finally, I could take it no longer and went downstairs to check on him. He snuggled in immediately. And immediately, he was able to pull it together. So who knows? Maybe he still felt kind of crummy. Or maybe he felt fine but just didn't want to "work". I really can't blame him. I ended up sitting with him in the rocking chair and he fell asleep for 1.5 hours and missed the first half of his last therapy session. It was nice to be able to baby him a little. It's just so hard to know what to do - when is it okay to baby him and when is it a disservice to his progress in therapy?
This is a really tough one for me. When big brother is sick (even with just a runny nose), he typically lays on the couch all day and gets to eat and watch whatever he wants. B-man is no longer afforded the same luxury. B also has always been so much more of a trooper when he doesn't feel well. Last year, we flew to Texas and spent over a week there only to find out AFTER we came back that B had a double ear infection. This is one of those times that I really, really wish he could just TELL me how he feels so I don't make the wrong decision and push him too hard. Nevertheless, I guess I'll swallow my mommy guilt for now and hope he is 100% tomorrow. And I hope that someday he'll understand how much I wish I could make everything easier for him.
On Monday, he seemed perfectly normal when I left to take big brother to get a cavity filled and for our "mommy date". When we came home around 12:30, B was asleep on the babysitter with a 101 temp. So, he got a nap and some motrin and the afternoon "off" from therapy. When he woke up, he was fine and ate a normal dinner etc. But around 6 pm, he just wanted to snuggle and ended up falling asleep in my arms for another 45 minute nap. We canceled his next morning therapy session but kept the afternoon one from 2:15 - 6 on schedule. He struggled through it but not really any more than a lot of his sessions.
And that brings us to today. I had to wake him at 8:15 (really late for him) and he was clingy but had no fever or symptoms. I was worried to leave him but gave him a dose of motrin to be on the safe side and headed out. I called after an hour and was told he was doing okay. Needless to say, I was really anxious to see him when we came home at 1. Unfortunately, he was crying in the basement when we came in so I had to refrain. For almost an hour, I listened to him sob. We made lunch and a batch of cupcakes and tried to be distracted. Finally, I could take it no longer and went downstairs to check on him. He snuggled in immediately. And immediately, he was able to pull it together. So who knows? Maybe he still felt kind of crummy. Or maybe he felt fine but just didn't want to "work". I really can't blame him. I ended up sitting with him in the rocking chair and he fell asleep for 1.5 hours and missed the first half of his last therapy session. It was nice to be able to baby him a little. It's just so hard to know what to do - when is it okay to baby him and when is it a disservice to his progress in therapy?
This is a really tough one for me. When big brother is sick (even with just a runny nose), he typically lays on the couch all day and gets to eat and watch whatever he wants. B-man is no longer afforded the same luxury. B also has always been so much more of a trooper when he doesn't feel well. Last year, we flew to Texas and spent over a week there only to find out AFTER we came back that B had a double ear infection. This is one of those times that I really, really wish he could just TELL me how he feels so I don't make the wrong decision and push him too hard. Nevertheless, I guess I'll swallow my mommy guilt for now and hope he is 100% tomorrow. And I hope that someday he'll understand how much I wish I could make everything easier for him.
Monday, January 17, 2011
Giggles
Here's a clip of B cracking up at a video of Cookie Monster on Youtube.
http://www.youtube.com/watch?v=ITxGM8MR1Ek
Aside from how adorable I find it, here is what I see:
1) he looks up twice when I call him (great eye contact progress) - he even smiles. And the light is ON in those big, beautiful eyes
2) the laugh is genuine and he is amused - this is NOT a stim (autism stereotype)
3) he's rocking and twitching his fingers some (these are very definitely autism traits)
4) he is pretty successfully navigating the Ipad which he figured out all on his own (go B!)
This is what I do and have done for the last year... everything is in terms of autism v. "normal"... progress v. developmental need. I can't help it - so much of our recent life has been dedicated to assessing and analyzing his behavior and development.
I hesitated whether to even post this. I know many who read this do not know him personally. And well - in it, he looks like a kid who has autism - the rocking is a dead giveaway. I don't see him that way until I put him out there in the real world and see him through others' eyes. I don't like it. I want to protect him and us from others perceptions. He is so much more than his disorder. So, so much more.
But I am posting. The reason for my blog is to document our journey and I think keeping a video record will be helpful. And he really is super adorable in my humble opinion. Plus, I can't wait to look back in surprise at how far he has come.
http://www.youtube.com/watch?v=ITxGM8MR1Ek
Aside from how adorable I find it, here is what I see:
1) he looks up twice when I call him (great eye contact progress) - he even smiles. And the light is ON in those big, beautiful eyes
2) the laugh is genuine and he is amused - this is NOT a stim (autism stereotype)
3) he's rocking and twitching his fingers some (these are very definitely autism traits)
4) he is pretty successfully navigating the Ipad which he figured out all on his own (go B!)
This is what I do and have done for the last year... everything is in terms of autism v. "normal"... progress v. developmental need. I can't help it - so much of our recent life has been dedicated to assessing and analyzing his behavior and development.
I hesitated whether to even post this. I know many who read this do not know him personally. And well - in it, he looks like a kid who has autism - the rocking is a dead giveaway. I don't see him that way until I put him out there in the real world and see him through others' eyes. I don't like it. I want to protect him and us from others perceptions. He is so much more than his disorder. So, so much more.
But I am posting. The reason for my blog is to document our journey and I think keeping a video record will be helpful. And he really is super adorable in my humble opinion. Plus, I can't wait to look back in surprise at how far he has come.
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