Another funny/sweet big boy story from today. We had 4 team members here this morning. Two were meeting with me and 2 were playing with B. My big guy ducked down in the basement with the therapists for a while. On the way to school, he says to me "Mommy, I had fun playing with the girls at my house. And, I've been thinking - having all these girls in my house is kind of like a family." Indeed it is, buddy. A family unlike anything I've ever experienced but I guess it is some semblance of a family. I'm pretty proud of how well he's starting to handle all of this.
xmas 2013
Tuesday, September 28, 2010
Cue the tantrums
I predicted this. My easy-going, happy go-lucky boy does in fact have quite a temper. We're seeing all sorts of protests these days in varying degrees. Last night was the mother of all tantrums for him. When I turned off a video they were watching and said it was time for bed, let's just say B wasn't happy. He went on a bit of a rampage and swept toys off the table and onto the floor, knocked over a kitchen chair and threw himself down on the floor. I still wouldn't say he was in a rage - he was just sobbing and couldn't seem to get out of it. I did as I've been directed and completely ignored it, trying to read to his brother over the loud crying. Once he was finally calm, I went to him and he collapsed, exhausted, in my arms. He went right to sleep after that (kind of a nice side effect). We were assured in our parent meeting this morning that this is a very good sign. I've read about this. These kids are having their lives turned upside down. It's good that it bothers him. It's good that he cares and it's good that he's letting us know about it. It's the kids that are totally complacent that are less likely to have a good outcome because they aren't motivated to do something about it. So, it's a good sign. Not a fun one - but a good one.
Monday, September 27, 2010
Delicate balance
Today, when our therapist arrived for a second shift, B threw a toy down the stairs, said "uh oh" and turned and grinned. It was a pretty big, exciting moment. He got huge kudos for talking. A minute or two later, he tossed something in his room and again said "uh oh". Therein lies the balance. We want to reward him for talking but do not want to reinforce the behavior. It's the same issue that makes me want to give him cake or a cookie at 8:00 in the morning because he tried to say it.
Also, he just took popcorn out of big bro.'s bowl and ate a handful and then wanted more. This too is huge. B is not willing to try new foods typically. He pretty much pushes anything away that he hasn't eaten before and liked. We've tried popcorn several times before and he wanted nothing to do with it. Now, it's not like he's eating broccoli or something with some actual nutrition but I'll take it. It's the little things.
And because I do not want to neglect my big boy, I just have to log this comment because I don't ever want to forget. Twice now, when I've done something he didn't like, he put on his best authoritative tone and declared "Mommy Nicholas". It makes sense, right? When he's in trouble, he's Andrew Nicholas. Love it. Love him.
Also, he just took popcorn out of big bro.'s bowl and ate a handful and then wanted more. This too is huge. B is not willing to try new foods typically. He pretty much pushes anything away that he hasn't eaten before and liked. We've tried popcorn several times before and he wanted nothing to do with it. Now, it's not like he's eating broccoli or something with some actual nutrition but I'll take it. It's the little things.
And because I do not want to neglect my big boy, I just have to log this comment because I don't ever want to forget. Twice now, when I've done something he didn't like, he put on his best authoritative tone and declared "Mommy Nicholas". It makes sense, right? When he's in trouble, he's Andrew Nicholas. Love it. Love him.
Saturday, September 25, 2010
Sleeping like a baby
I did end up going in B's room last night. He quieted down for a good long while and was doing his usual jabber. However, it was 10:30 and he didn't sound close to winding down. So, I went in and picked up all of his stuff (pacifier, lovies, blankets) and put them back in bed with him. He went right to sleep. I'm not sure if it was the right thing but I felt like I wasn't reinforcing the crying. And I didn't pick him up or talk to him. I just didn't want him awake all night.
That said, he went down without a single cry tonight and was asleep within 45 minutes which is fast for him especially considering he took a nap today. Today was a day free of therapy - I hope that's just a coincidence and not a correlation. We'll find out tomorrow.
B has been rocking the eye contact and his "sit" goal (learning to sit in a chair when asked) and he has had a lot of vocal approximations this weekend. He's a superstar - I just know it.
That said, he went down without a single cry tonight and was asleep within 45 minutes which is fast for him especially considering he took a nap today. Today was a day free of therapy - I hope that's just a coincidence and not a correlation. We'll find out tomorrow.
B has been rocking the eye contact and his "sit" goal (learning to sit in a chair when asked) and he has had a lot of vocal approximations this weekend. He's a superstar - I just know it.
Friday, September 24, 2010
STILL crying
What is going on with this bedtime crying? He hasn't done this in so, so, so long. It was MUCH easier to let them cry it out when they were babies though I didn't think so at the time. It has been almost an hour since I said goodnight. He has alternated between whining and sobbing for at least the last 45. I thought we were in good shape since he didn't start it right away but I was wrong. I'm trying to keep myself as busy as possible to avoid going in there. But I'd be lying if I didn't say I'm hating this. I could use my team of cheerleaders right about now.
Thursday, September 23, 2010
The good, the bad and the ugly
Today was our official review of all of the assessments and B's plan for treatment. At this point, it's really too soon to tell much about his prognosis or response to therapy. Still, they collected and presented the data.
First: the ugly: According to their "tests", he is only about 5 months old developmentally. They recommended a four year intensive plan to try to catch him up. Four years... ready for kindergarten around age 7. Gulp.
The bad: He needs the maximum amount of therapy they offer - 40 hours per week, 6 days a week.
The good: He does have some encouraging skills. He responds extremely well to social reinforcement and they are "excited" and "optimistic" about his potential. And, they think we as parents have "what it takes" to make this work. In fact, they are so confident in my abilities that I am being rewarded with double the amount of time typically required for parent-delivered therapy and almost double the number of goals. Also, his external assessments by a psychologist and the school district both gave him a much higher developmental score (the same score in fact) so it could be very likely that their testing is skewed much too low. I personally am quite sure that he functions at a much, much higher level than 5 months.
It was a bit of a sucker punch in the gut but I still feel encouraged. We'll have a much better sense of his potential outcome in our next meeting (end of December). In the meantime, I plan to work my butt off so we can blow them away with his progress.
And here we are with another night of crying when I put him to bed. Tonight, he took it to a new level and threw all of his blankets, lovies and pacifier out of the crib. I went in once but after he did it again, I decided it was a negative behavior that shouldn't be reinforced by my attention (I'm getting the hang of this). He's now whining off and on and staring down at the stuff he threw (thank you video monitor). He has been in bed for an hour and 20 minutes but who's counting?
First: the ugly: According to their "tests", he is only about 5 months old developmentally. They recommended a four year intensive plan to try to catch him up. Four years... ready for kindergarten around age 7. Gulp.
The bad: He needs the maximum amount of therapy they offer - 40 hours per week, 6 days a week.
The good: He does have some encouraging skills. He responds extremely well to social reinforcement and they are "excited" and "optimistic" about his potential. And, they think we as parents have "what it takes" to make this work. In fact, they are so confident in my abilities that I am being rewarded with double the amount of time typically required for parent-delivered therapy and almost double the number of goals. Also, his external assessments by a psychologist and the school district both gave him a much higher developmental score (the same score in fact) so it could be very likely that their testing is skewed much too low. I personally am quite sure that he functions at a much, much higher level than 5 months.
It was a bit of a sucker punch in the gut but I still feel encouraged. We'll have a much better sense of his potential outcome in our next meeting (end of December). In the meantime, I plan to work my butt off so we can blow them away with his progress.
And here we are with another night of crying when I put him to bed. Tonight, he took it to a new level and threw all of his blankets, lovies and pacifier out of the crib. I went in once but after he did it again, I decided it was a negative behavior that shouldn't be reinforced by my attention (I'm getting the hang of this). He's now whining off and on and staring down at the stuff he threw (thank you video monitor). He has been in bed for an hour and 20 minutes but who's counting?
Wednesday, September 22, 2010
No more tears
B's in his bed crying. This is extremely unusual bedtime behavior. He usually takes a long time to go to sleep but he never cries. I have already gone in once to check on him. He was peering over the side of the bed and sure enough, had dropped his bear behind it. Now I think he is just really tired. It was a no-nap day. But I can't wait for him to fall asleep.
There is entirely too much crying around here right now. We're working on this. Our team wants him to be in a place where he is challenged but successful and motivated. We don't want him frustrated and we certainly don't want him to give up. As best we can tell, he isn't crying because of the new demands being placed on him (they're not much and mostly fun play at this point) but just that he isn't able to do what he wants to do instead. It's a control thing. Really, who can blame him? I would be pretty upset if someone started invading my personal space and re-arranging all of my free time.
And we're working on our responses to his crying... as in, I can not give him physical attention while he's crying but have to wait until he stops. It makes sense - we don't want him to use crying as a way to get attention. But it's not easy.
Five more minutes and I'm so going in.
There is entirely too much crying around here right now. We're working on this. Our team wants him to be in a place where he is challenged but successful and motivated. We don't want him frustrated and we certainly don't want him to give up. As best we can tell, he isn't crying because of the new demands being placed on him (they're not much and mostly fun play at this point) but just that he isn't able to do what he wants to do instead. It's a control thing. Really, who can blame him? I would be pretty upset if someone started invading my personal space and re-arranging all of my free time.
And we're working on our responses to his crying... as in, I can not give him physical attention while he's crying but have to wait until he stops. It makes sense - we don't want him to use crying as a way to get attention. But it's not easy.
Five more minutes and I'm so going in.
Monday, September 20, 2010
Exhausting work
Thursday, September 16, 2010
Sleep
B's new "job" is definitely disturbing his sleep (and mine). He has been a bit of an erratic sleeper for a while. His usual pattern involved going to bed at 8 and loudly entertaining himself until close to 10 but then sleeping until 7:30 or 8. His naps were all over the board. He seemed to still need one (demonstrated by the fact that he'd crash sitting up in the late afternoons or anytime we were in the car longer than about 3 minutes). But, it was hard to get him to take it. I could usually rock him to sleep if I timed it just right and he'd sleep anywhere from 30 minutes to 2.5 hours. A shorter nap seemed best.
In an effort to get as many therapy hours as we could, we didn't reserve time for a nap every day. He seemed to fall asleep fast and sleep better without one. He has really been all over the place these last couple of weeks though. He crashed for THREE hours last friday after a full week of his job. He has also fallen asleep late in the day (3:00, 5:00) and some other weird patterns. The worst part is that he has been waking up in the night again. He used to do this on a regular basis - practically every night. He doesn't cry but babbles, laughs, jumps and just generally makes a lot of noise for like TWO full hours. I am always afraid to turn off the monitor in case he does cry or say gets out of the crib (which he has never done). Ear tubes seemed to solve this. He pretty much stopped doing it after the surgery so we thought we had least had some evidence that he truly needed that procedure.
Apparently, sleep disturbances like these are really common in autism and some parents have it MUCH worse. There are kids who literally barely sleep at night and keep the rest of the family up. The biomedical nurse that I saw suggested melatonin. Our pediatrician had also suggested that at one point when big bro. was having trouble adjusting to traveling. We have tried it 3 times. The first time was the day of the marathon nap and he was asleep in about 30 minutes - no way that would've happened otherwise. I thought we had found our miracle cure. But alas, he was awake in the night and up early. Same effect the second time. We tried it once more and it didn't seem to do anything at all. I'm not sure this is our answer. Maybe it needs to be used regularly or at a higher dose. Or maybe he just needs some time to get used to the new routine.
Add in a preschooler with a cold who (very pitifully) was up 3 times before midnight and you have one tired mama. I think I may have gotten about 4 hours of interrupted sleep last night. Before kids, I used to consider sleep my super power. I fell asleep quickly, could sleep 10/11 hours and STILL take a long nap. That all changed the day my first baby was born. I went for 2 days without being able to sleep until the nurse at the hospital insisted I take a sleeping pill (which still didn't work). All through infancy, I was never good at sleeping when the baby slept with either of my kids. I had a hard time falling asleep when I didn't know how long it was going to be before I had to get up again. I was never one to doze off while feeding the baby or to do it all in a dream-like state. I was up for a long while after most feedings. As they've gotten older, I have that same problem with falling back asleep if I hear them on the monitor. I lie awake the full 2 hours listening to B and turning on the video when it's quiet to see if he's asleep. And sometimes, my mind gets turning and I'm awake much longer than he is. I never knew sleep deprivation could last this long. I know I'm not alone though - I simply joined the ranks of sleepless parents everywhere. I'll sleep when they're grown... maybe.
In an effort to get as many therapy hours as we could, we didn't reserve time for a nap every day. He seemed to fall asleep fast and sleep better without one. He has really been all over the place these last couple of weeks though. He crashed for THREE hours last friday after a full week of his job. He has also fallen asleep late in the day (3:00, 5:00) and some other weird patterns. The worst part is that he has been waking up in the night again. He used to do this on a regular basis - practically every night. He doesn't cry but babbles, laughs, jumps and just generally makes a lot of noise for like TWO full hours. I am always afraid to turn off the monitor in case he does cry or say gets out of the crib (which he has never done). Ear tubes seemed to solve this. He pretty much stopped doing it after the surgery so we thought we had least had some evidence that he truly needed that procedure.
Apparently, sleep disturbances like these are really common in autism and some parents have it MUCH worse. There are kids who literally barely sleep at night and keep the rest of the family up. The biomedical nurse that I saw suggested melatonin. Our pediatrician had also suggested that at one point when big bro. was having trouble adjusting to traveling. We have tried it 3 times. The first time was the day of the marathon nap and he was asleep in about 30 minutes - no way that would've happened otherwise. I thought we had found our miracle cure. But alas, he was awake in the night and up early. Same effect the second time. We tried it once more and it didn't seem to do anything at all. I'm not sure this is our answer. Maybe it needs to be used regularly or at a higher dose. Or maybe he just needs some time to get used to the new routine.
Add in a preschooler with a cold who (very pitifully) was up 3 times before midnight and you have one tired mama. I think I may have gotten about 4 hours of interrupted sleep last night. Before kids, I used to consider sleep my super power. I fell asleep quickly, could sleep 10/11 hours and STILL take a long nap. That all changed the day my first baby was born. I went for 2 days without being able to sleep until the nurse at the hospital insisted I take a sleeping pill (which still didn't work). All through infancy, I was never good at sleeping when the baby slept with either of my kids. I had a hard time falling asleep when I didn't know how long it was going to be before I had to get up again. I was never one to doze off while feeding the baby or to do it all in a dream-like state. I was up for a long while after most feedings. As they've gotten older, I have that same problem with falling back asleep if I hear them on the monitor. I lie awake the full 2 hours listening to B and turning on the video when it's quiet to see if he's asleep. And sometimes, my mind gets turning and I'm awake much longer than he is. I never knew sleep deprivation could last this long. I know I'm not alone though - I simply joined the ranks of sleepless parents everywhere. I'll sleep when they're grown... maybe.
Monday, September 13, 2010
Ingenuity
I gotta hand it to him. With no trains in sight, B just improvised with the next closest thing. See how the VERY large Thomas is "coupled" with a truck? Man, I love that kid.
Our morning therapy session is over - we have another one in an hour and a half. I'm pretty sure the big trains and perhaps the tracks are next.
Friday, September 10, 2010
We knew it wouldn't be easy
Today was challenging. We met with our team this morning to talk about the parent involvement portion of this therapy, which is HUGE. We have 2 weekly meetings plus 2 hours of parent training EVERY week. It's a lot... and I don't have a full-time job on top of it.
After the meeting, I took my big boy to his first day of his Friday Morning out program. He did this last year so it wasn't much of a big deal but it still is weird to me to drop him off somewhere. It's not weird to him - quick hug and he is more than ready for me to leave. But it reminds me how quickly he is growing up.
After the drop-off, I rushed home to do a videotaped assessment with B. We had to do three 10-minute segments of play. The first one was B playing independently, the next was the 2 of us playing in the way he directed and the third was me directing him to play. It started out okay for about 1.5 minutes and THEN... he decided he'd rather go upstairs. And he just could not understand why I wouldn't go with him. He cried like I have never seen him cry before. He even tensed up and kind of threw himself down - a behavior I have never seen from him. It was awful. Ten minutes felt like an eternity. I was able to engage him in the toys for a minute or two but then he'd just get even more upset. We have some nice footage of him crying... in no way indicative of the way he plays. In short, it sucked but we got through it and he was rewarded with his coveted Thomas videos.
And on the subject of trains, here's a doozie. Our team wants to try limiting his access to his prized possessions. Trains are his world and it's pretty clear that they are distracting him from being able to learn. They want to test using them as reinforcers meaning that he gets to play with them as a reward for a specific skill or behavior and not just play with them whenever he wants. On Sunday night, we will hide his enormous bin of trains and see how it goes. Here's hoping he's "motivated - not miserable" as our therapists are aiming for. We have a pretty intensive week of therapy so at least we won't be alone in our efforts. Poor B. It just isn't fair that he has to work so much harder for the things we take for granted.
After the meeting, I took my big boy to his first day of his Friday Morning out program. He did this last year so it wasn't much of a big deal but it still is weird to me to drop him off somewhere. It's not weird to him - quick hug and he is more than ready for me to leave. But it reminds me how quickly he is growing up.
After the drop-off, I rushed home to do a videotaped assessment with B. We had to do three 10-minute segments of play. The first one was B playing independently, the next was the 2 of us playing in the way he directed and the third was me directing him to play. It started out okay for about 1.5 minutes and THEN... he decided he'd rather go upstairs. And he just could not understand why I wouldn't go with him. He cried like I have never seen him cry before. He even tensed up and kind of threw himself down - a behavior I have never seen from him. It was awful. Ten minutes felt like an eternity. I was able to engage him in the toys for a minute or two but then he'd just get even more upset. We have some nice footage of him crying... in no way indicative of the way he plays. In short, it sucked but we got through it and he was rewarded with his coveted Thomas videos.
And on the subject of trains, here's a doozie. Our team wants to try limiting his access to his prized possessions. Trains are his world and it's pretty clear that they are distracting him from being able to learn. They want to test using them as reinforcers meaning that he gets to play with them as a reward for a specific skill or behavior and not just play with them whenever he wants. On Sunday night, we will hide his enormous bin of trains and see how it goes. Here's hoping he's "motivated - not miserable" as our therapists are aiming for. We have a pretty intensive week of therapy so at least we won't be alone in our efforts. Poor B. It just isn't fair that he has to work so much harder for the things we take for granted.
Tuesday, September 7, 2010
Reflections/Early signs
For some reason (likely because I am neurotic and like to torture myself), I have spent a lot of this waiting time thinking about the onset of B's autism. He did not have the type of regression that you hear about where the child is developing totally normally and then starts to lose skills like language, play etc. And I definitely did not "just know" that something was "off" the way many parents do. When we first started using the A word, I was pretty positive that there was nothing distinguishable about B other than his late language acquisition. And, to be fair, it isn't unheard of for a 2 year old not to be talking. I couldn't think of anything else that was different about him.
B's autism did not present itself in a typical manner - at least not in anything I've read about. His primary "symptom" was excessive happiness and silliness... what parent would worry about that? When we were first going through the quest for answers and diagnosis, I spent considerable time looking back through all of his pictures. There he is, looking right at the camera with a huge smile on his face. I couldn't find any where he was looking sideways or off in his own world. This could of course be due in part to the digital camera age whereby I take 30 similar shots and delete all but 2 or 3 of the good ones. But I don't think so. He truly was always happy and smiling. Friends told me how lucky I was to have such a happy baby.
More recently, I've looked back at some video clips which are a little more telling. Admittedly, my organization of our videos needs some work - we have about 10 tapes that we haven't done anything with other than record the footage. So, I haven't looked at all of that. But I do have some quick clips on Youtube that were taken with my regular camera. There is one of his first bday where he rocks very briefly in his chair. Maybe that was autism. Maybe it was just something a one year old does. And there's a video of him running back and forth in our living room over and over and laughing hysterically. Autism? Or typical of a 1.5 year old? I don't know. He still does these things now and they are more pronounced and more obviously different than other kids his age. But back then, I'm not sure anyone would've picked him out.
Thinking back, there may have been some clues to the puzzle. I do remember complaining that he was really hard to teach. He didn't ever seem to be proud of himself when he did something and it was SO hard to keep his interest. He would acquire a new skill like waiving or clapping and we would see it once or twice and then never again. He didn't seem to seek out our approval. And he never pointed at things or brought us things that he found interesting. I never gave it a second thought. Life was so busy just trying to keep up with the 2 little ones. Happy, well-rested, well-fed boys was a successful day in my book.
So I'm really not sure when this started. I thought he had progressed completely normally until about 18 months old and then lagged behind with language. But maybe he was born with it and the symptoms just didn't manifest until later. I really don't know. And I'm not sure if or why it matters.
Likely a trained professional could've identified his disorder much sooner. I have heard of kids as young as 15 months getting the same type of intense intervention that we are doing now. Yes, 15 months. Even if it may have helped him recover or improve sooner, I'm glad we didn't know then. I'm glad we had 2 years. Two years of our "normal" family with our 2 "perfect" boys. Two years where I didn't study everything he did and wonder what it meant. Two years where I didn't see anything wrong with his silliness. Two years without the nagging worry. Because this path is considerably harder. And sometimes ignorance truly is bliss.
B's autism did not present itself in a typical manner - at least not in anything I've read about. His primary "symptom" was excessive happiness and silliness... what parent would worry about that? When we were first going through the quest for answers and diagnosis, I spent considerable time looking back through all of his pictures. There he is, looking right at the camera with a huge smile on his face. I couldn't find any where he was looking sideways or off in his own world. This could of course be due in part to the digital camera age whereby I take 30 similar shots and delete all but 2 or 3 of the good ones. But I don't think so. He truly was always happy and smiling. Friends told me how lucky I was to have such a happy baby.
More recently, I've looked back at some video clips which are a little more telling. Admittedly, my organization of our videos needs some work - we have about 10 tapes that we haven't done anything with other than record the footage. So, I haven't looked at all of that. But I do have some quick clips on Youtube that were taken with my regular camera. There is one of his first bday where he rocks very briefly in his chair. Maybe that was autism. Maybe it was just something a one year old does. And there's a video of him running back and forth in our living room over and over and laughing hysterically. Autism? Or typical of a 1.5 year old? I don't know. He still does these things now and they are more pronounced and more obviously different than other kids his age. But back then, I'm not sure anyone would've picked him out.
Thinking back, there may have been some clues to the puzzle. I do remember complaining that he was really hard to teach. He didn't ever seem to be proud of himself when he did something and it was SO hard to keep his interest. He would acquire a new skill like waiving or clapping and we would see it once or twice and then never again. He didn't seem to seek out our approval. And he never pointed at things or brought us things that he found interesting. I never gave it a second thought. Life was so busy just trying to keep up with the 2 little ones. Happy, well-rested, well-fed boys was a successful day in my book.
So I'm really not sure when this started. I thought he had progressed completely normally until about 18 months old and then lagged behind with language. But maybe he was born with it and the symptoms just didn't manifest until later. I really don't know. And I'm not sure if or why it matters.
Likely a trained professional could've identified his disorder much sooner. I have heard of kids as young as 15 months getting the same type of intense intervention that we are doing now. Yes, 15 months. Even if it may have helped him recover or improve sooner, I'm glad we didn't know then. I'm glad we had 2 years. Two years of our "normal" family with our 2 "perfect" boys. Two years where I didn't study everything he did and wonder what it meant. Two years where I didn't see anything wrong with his silliness. Two years without the nagging worry. Because this path is considerably harder. And sometimes ignorance truly is bliss.
Friday, September 3, 2010
Away we go
I guess it's safe to say we're up and running with B's ABA. It has been a busy week to say the least. We had an intake appointment on Tuesday morning (complete with paperwork that rivals buying a house) and then have had daily assessments the rest of the week.
So far so good. This has definitely been a case of prepare for the worst and hope for the best. I am pleasantly surprised. I kind of thought he would spend the bulk of his time crying. Instead, I saw laughter, giddiness and glee (with some occasional tears of course). He seemed to THRIVE on the attention of these very skilled ladies. I also expected to have a hard time watching the assessments conducted. This was very different this time around too. I already know what B can and can't do all too well. Months of evaluations will do that. So it didn't bother me to see them asking him to label something or throw a ball (for example) and having him totally ignore it. I now see it as an opportunity for growth rather than a weakness.
The first time he was evaluated was heartbreaking. I didn't realize just how far behind he was. Think about it - you don't really sit around and analyze your kids skills when they are seemingly on track. I STILL couldn't tell you nearly as much about what my firstborn can and can't do as I can about B... he hasn't been under the microscope. The last time around was also very confusing because it was hard to know how much he "could" do vs. how much he "would" do. I found myself testing him all the time looking for autism... if he did X, then he wasn't on the spectrum... oh but wait - he just did Z - maybe he is. In a 2 year old, there is a wide range of normal. It seemed like if you looked for it hard enough, you'd find autism in any kid. This is another reason why it took us so long to get to a solid diagnosis.
Really the only thing that was almost as tough as I expected was how to handle big bro. during all this. He really, really wants it to be about him. He too was thrilled to have these ladies in our home to "play" and it's not easy keeping him from eating up their time. I found myself having to try really, really hard to make Mommy as interesting of a play partner. But it's good for him too - he's going to gain some skills as well. And they are fantastic at including him and making it fun for him as well. Plus, he will start preschool after next week and that (I'm hoping) will make a huge difference.
This is only the assessment period... we haven't started the real work yet. And it's the honeymoon phase - I had people in my home for 2-3 hours a day - not 6-8. I'm sure the tough stuff is yet to come but we're at least off to a good start.
I also made a trip to a biomedical practice this week to explore that side of the equation. I'm too overwhelmed about it right now to even write it down. One thing at a time...
So far so good. This has definitely been a case of prepare for the worst and hope for the best. I am pleasantly surprised. I kind of thought he would spend the bulk of his time crying. Instead, I saw laughter, giddiness and glee (with some occasional tears of course). He seemed to THRIVE on the attention of these very skilled ladies. I also expected to have a hard time watching the assessments conducted. This was very different this time around too. I already know what B can and can't do all too well. Months of evaluations will do that. So it didn't bother me to see them asking him to label something or throw a ball (for example) and having him totally ignore it. I now see it as an opportunity for growth rather than a weakness.
The first time he was evaluated was heartbreaking. I didn't realize just how far behind he was. Think about it - you don't really sit around and analyze your kids skills when they are seemingly on track. I STILL couldn't tell you nearly as much about what my firstborn can and can't do as I can about B... he hasn't been under the microscope. The last time around was also very confusing because it was hard to know how much he "could" do vs. how much he "would" do. I found myself testing him all the time looking for autism... if he did X, then he wasn't on the spectrum... oh but wait - he just did Z - maybe he is. In a 2 year old, there is a wide range of normal. It seemed like if you looked for it hard enough, you'd find autism in any kid. This is another reason why it took us so long to get to a solid diagnosis.
Really the only thing that was almost as tough as I expected was how to handle big bro. during all this. He really, really wants it to be about him. He too was thrilled to have these ladies in our home to "play" and it's not easy keeping him from eating up their time. I found myself having to try really, really hard to make Mommy as interesting of a play partner. But it's good for him too - he's going to gain some skills as well. And they are fantastic at including him and making it fun for him as well. Plus, he will start preschool after next week and that (I'm hoping) will make a huge difference.
This is only the assessment period... we haven't started the real work yet. And it's the honeymoon phase - I had people in my home for 2-3 hours a day - not 6-8. I'm sure the tough stuff is yet to come but we're at least off to a good start.
I also made a trip to a biomedical practice this week to explore that side of the equation. I'm too overwhelmed about it right now to even write it down. One thing at a time...
Thursday, September 2, 2010
Autism is not all bad
So, we are FINALLY (it seems we've been waiting forever) about to start B's behavior therapy. We have no idea how successful this will be but as we aim for "best outcome" and "recovery", I am thinking about all of the things that make the little guy who he is. And yes, these are all at least partially a result of his autism but I have to say, there are some things (quite a few in fact) that, if "recovered" from, I will truly miss.
#1. The laughter. Now, of course I know that B will always continue to laugh no matter what. But the way he laughs now, that all-encompassing, doubled-over, drunken laugh that comes out of nowhere and lasts for an insane amount of time? That I will miss. Seriously - I have listened to him laugh in his bed for HOURS at a time and even though he really should be sleeping, it always brings a giant smile to my face. I would bottle it if I could.
#2. His babble. You know how absolutely adorable it is when little ones start playing with their voices? They truly seem to believe that they are talking even though it sounds like a very bizarre foreign language. B's language has always been particularly cute in my opinion. It's almost musical. I have a lot of videos of him "talking" because it is so stinking cute and I just knew that it was going to give way to real words and we'd miss it. Little did I know. When he was initially observed and the ladies pointed out to me that this was nonsensical self-stimulatory behavior and not an effort to communicate, I was crushed. Had one of the things that I so loved about him really been a symptom of a disorder?
#3. His baby qualities. These are twofold. First, as soon as I pick him up (which he loves), he snuggles in and lays his head against my neck. It is the sweetest, most wonderful thing. If only he weren't practically as long as I am and over 30 lbs, I would carry him around all day. He and I both would love it. But oh my aching back. Second, almost every day - I rock him to sleep. He lays up against me and snuggles in while I sing or hum songs until he falls into lala land. The memory is a tricky thing when it comes to ages & stages, but I know that his big brother stopped falling asleep on us MUCH earlier in life. We took away his rocker with the arrival of a big boy bed at age 3. I remember that we were sad that we couldn't sit with him and read before bed but certainly not that he would no longer be rocked to sleep. I doubt there are many almost 3-year olds who still allow themselves to be babied this way.
#4. The lack of sibling arguing and fighting. I have enough friends with kids to know that this is a HUGE struggle in most homes. I can only imagine what it would be like here with 2 "typical" boys only 15 months apart and interested in the same toys. I would be referee - that's for sure. In our house, it goes mostly like this - Big and Little brother have different primary interests which keeps one mostly playing with cars and the other with trains. However, when they do want the same thing, B-man will either cry (in a sad, tortured way- not in the annoying whiny way) or he just moves on. Again, this isn't a good thing - B should hold his own and his big brother shouldn't be able to play at home any differently than when he has to share with playmates but it does make my life easier.
#5. Along the same lines (and I hope this doesn't make me a bad mom), I can not imagine having the CONSTANT questions, talking, complaining, negotiating, mommy/mommy/mommmmmmmy-ing that my first son exhibits. Do not get me wrong - I LOVE and adore my big boy to bits and pieces but he.never.ever.stops.talking! from the minute he gets up until the minute he goes to bed. It is exhausting and if it was coming at me from 2 directions, I might just lose my mind.
#6. Tantrums or lack thereof. My little one really doesn't tantrum. He cries with big crocodile tears like his heart is breaking sometimes but he does not throw himself on the ground kicking and screaming because someone looked at him funny or some other grossly exaggerated perceived injustice. I've seen some doozy tantrums from my son and from many a 2 and 3 year old and B just really hasn't ever had one. I know now that this is because we keep him in his comfort zone. He's very easy-going and it's pretty much second nature to keep him happy so that's what we do. I anticipate his needs and I meet them before he ever really has a reason to be upset. This is going to be a huge change as we undergo constant therapy where he has to come out of his comfort zone. I anticipate tantrums like I've never seen before and it's one of the things that scares me the most about this next step. But - tantrums are good - they are a normal, healthy part of development and we all live through it. Someone remind me of this later.
#7. Finally, this is one that I don't expect will ever go away but it is something I consider to be a blessing of autism. And that is that we celebrate and appreciate every single little accomplishment or development in an intense way that is just different than with typically developing kids. Hard to believe, I know. Let's face it - we all think our little offspring are amazing and do cuter and smarter and better things than any kid who has ever come before them. But when your kid still isn't talking and is almost 3, an attempt at something as simple as copying a one syllable word you've said is H-U-G-E.
Now, on the flip side - there are many, many behaviors and traits that I DO want to see change or simply go away and that list is growing. But it is my fervent hope from every part of my being that we will see the following 3 results:
#1. Please, please, please let him talk and understand what is being said to him. Some kids with autism are forever nonverbal. I can't bear this thought. I just feel in my heart of hearts that he has it in him. I long to hear his voice and to get to know him in a way that only comes with communication. We have waited SO long to hear him say Mommy and Daddy.
#2. I want to see my kids play together. Yes, this goes against my 4th point above, I know. I will take the fighting - really I will (again, remind me later). I just want my boys to have a relationship. I want them to entertain each other instead of always needing me. I am not naive enough to believe that they will be each other's best friend but sibling relationships are important... isn't that one of the reasons we all decided to have more than 1?
#3. I want B to take an interest in the world around him. He is not stuck in a sad, isolated world of his own (as I thought autism meant) but he does not participate in things the way he should. A recent example... I took the boys to an aquarium. B never cried or complained but he did NOT want to get out of his stroller and pretty much was just along for the ride. He could've been anywhere - not one single thing piqued his interest. It's a heartbreaking thing to watch. I am painfully aware that I sounded and looked like a crazy woman "LOOK at that FISH - wow - have you ever seen anything like that. Look OVER THERE. B.? B.?" You get the drift. I want him to have fun in the way that other 3 year olds do. My big guy was filled with wonder and delight and I want that for B too.
#1. The laughter. Now, of course I know that B will always continue to laugh no matter what. But the way he laughs now, that all-encompassing, doubled-over, drunken laugh that comes out of nowhere and lasts for an insane amount of time? That I will miss. Seriously - I have listened to him laugh in his bed for HOURS at a time and even though he really should be sleeping, it always brings a giant smile to my face. I would bottle it if I could.
#2. His babble. You know how absolutely adorable it is when little ones start playing with their voices? They truly seem to believe that they are talking even though it sounds like a very bizarre foreign language. B's language has always been particularly cute in my opinion. It's almost musical. I have a lot of videos of him "talking" because it is so stinking cute and I just knew that it was going to give way to real words and we'd miss it. Little did I know. When he was initially observed and the ladies pointed out to me that this was nonsensical self-stimulatory behavior and not an effort to communicate, I was crushed. Had one of the things that I so loved about him really been a symptom of a disorder?
#3. His baby qualities. These are twofold. First, as soon as I pick him up (which he loves), he snuggles in and lays his head against my neck. It is the sweetest, most wonderful thing. If only he weren't practically as long as I am and over 30 lbs, I would carry him around all day. He and I both would love it. But oh my aching back. Second, almost every day - I rock him to sleep. He lays up against me and snuggles in while I sing or hum songs until he falls into lala land. The memory is a tricky thing when it comes to ages & stages, but I know that his big brother stopped falling asleep on us MUCH earlier in life. We took away his rocker with the arrival of a big boy bed at age 3. I remember that we were sad that we couldn't sit with him and read before bed but certainly not that he would no longer be rocked to sleep. I doubt there are many almost 3-year olds who still allow themselves to be babied this way.
#4. The lack of sibling arguing and fighting. I have enough friends with kids to know that this is a HUGE struggle in most homes. I can only imagine what it would be like here with 2 "typical" boys only 15 months apart and interested in the same toys. I would be referee - that's for sure. In our house, it goes mostly like this - Big and Little brother have different primary interests which keeps one mostly playing with cars and the other with trains. However, when they do want the same thing, B-man will either cry (in a sad, tortured way- not in the annoying whiny way) or he just moves on. Again, this isn't a good thing - B should hold his own and his big brother shouldn't be able to play at home any differently than when he has to share with playmates but it does make my life easier.
#5. Along the same lines (and I hope this doesn't make me a bad mom), I can not imagine having the CONSTANT questions, talking, complaining, negotiating, mommy/mommy/mommmmmmmy-ing that my first son exhibits. Do not get me wrong - I LOVE and adore my big boy to bits and pieces but he.never.ever.stops.talking! from the minute he gets up until the minute he goes to bed. It is exhausting and if it was coming at me from 2 directions, I might just lose my mind.
#6. Tantrums or lack thereof. My little one really doesn't tantrum. He cries with big crocodile tears like his heart is breaking sometimes but he does not throw himself on the ground kicking and screaming because someone looked at him funny or some other grossly exaggerated perceived injustice. I've seen some doozy tantrums from my son and from many a 2 and 3 year old and B just really hasn't ever had one. I know now that this is because we keep him in his comfort zone. He's very easy-going and it's pretty much second nature to keep him happy so that's what we do. I anticipate his needs and I meet them before he ever really has a reason to be upset. This is going to be a huge change as we undergo constant therapy where he has to come out of his comfort zone. I anticipate tantrums like I've never seen before and it's one of the things that scares me the most about this next step. But - tantrums are good - they are a normal, healthy part of development and we all live through it. Someone remind me of this later.
#7. Finally, this is one that I don't expect will ever go away but it is something I consider to be a blessing of autism. And that is that we celebrate and appreciate every single little accomplishment or development in an intense way that is just different than with typically developing kids. Hard to believe, I know. Let's face it - we all think our little offspring are amazing and do cuter and smarter and better things than any kid who has ever come before them. But when your kid still isn't talking and is almost 3, an attempt at something as simple as copying a one syllable word you've said is H-U-G-E.
Now, on the flip side - there are many, many behaviors and traits that I DO want to see change or simply go away and that list is growing. But it is my fervent hope from every part of my being that we will see the following 3 results:
#1. Please, please, please let him talk and understand what is being said to him. Some kids with autism are forever nonverbal. I can't bear this thought. I just feel in my heart of hearts that he has it in him. I long to hear his voice and to get to know him in a way that only comes with communication. We have waited SO long to hear him say Mommy and Daddy.
#2. I want to see my kids play together. Yes, this goes against my 4th point above, I know. I will take the fighting - really I will (again, remind me later). I just want my boys to have a relationship. I want them to entertain each other instead of always needing me. I am not naive enough to believe that they will be each other's best friend but sibling relationships are important... isn't that one of the reasons we all decided to have more than 1?
#3. I want B to take an interest in the world around him. He is not stuck in a sad, isolated world of his own (as I thought autism meant) but he does not participate in things the way he should. A recent example... I took the boys to an aquarium. B never cried or complained but he did NOT want to get out of his stroller and pretty much was just along for the ride. He could've been anywhere - not one single thing piqued his interest. It's a heartbreaking thing to watch. I am painfully aware that I sounded and looked like a crazy woman "LOOK at that FISH - wow - have you ever seen anything like that. Look OVER THERE. B.? B.?" You get the drift. I want him to have fun in the way that other 3 year olds do. My big guy was filled with wonder and delight and I want that for B too.
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