A fight broke out in my living room bright and early this morning. S and J were playing cars happily while I packed lunches for school. The next thing I knew J was lying on the floor, facedown, crying.
"S, what happened out here?!" I asked.
"I didn't do anything. He's just mad I pretended my car was an airplane and he punched me." said S, matter-of-factly.
Indeed, this sort of thing is pretty commonplace in our house.
J wailed from across the room. "He made his car an airplane!!! Cars can't fly, cars can't fly!!!! He can't make it an airplane!!!"
I picked him up off the floor, stood him up, and held his face in my hands so he would look at me. "J, S was just pretending his car could fly. That's fun! You need to let S play with the cars the way he wants to play with them and you play with the cars the way YOU want to play with them."
"No no no! Cars can't FLY! He can't DO that!!!" he insisted.
Again, not unusual. Some days, everything is going along just fine and then someone sings the wrong words to one of J's favorite songs, or puts something in the wrong place, or makes a car an airplane... and he loses it.
There was a time when B was little where I figured all parents dealt with freakouts of this nature. I gradually started to realize that wasn't true, but just assumed I had more challenging kids than other people.
Now that these types of behaviors have been pointed out to me over and over again as part of the ASD, it seems SO blantantly obvious to me. I always wonder how we all missed it for so long with B.
In fact, just last night, B, who has grown out of so much of the behavior that, years ago, would have easily classified him the same as J, had a baby tooth hanging by a thread. EVERY loose tooth brings drama for him, even at 10 years old. He doesn't like the way it feels, he's anxious about pulling it out, he doesn't want to touch it or even wiggle it and definitely doesn't want anyone ELSE to touch it... but at the same time, wants it OUT. So he just cries and cries and worries. "What if it falls out while I'm sleeping? What if it bleeds? I don't like the way it feels when it's loose. I don't like feeling the hole after the tooth falls out!" It went on and on. And just like that, it's as if he is five years old all over again.
All in all, these particular incidents were small blips in otherwise relatively easy days, but still, they were reminders that there are challenges we will always, ALWAYS deal with, even when things are going fairly smoothly.
It's actually a relief to me to finally know that we don't just have "more challenging kids". that we have more challenging kids for a reason, and that reason being that they process the world around them differently. I have to be honest, for awhile there, I thought we were just REALLY doing something wrong.
Not that knowing WHY J screams at his brother for calling a car an airplane makes that any less of a rough start to a morning.... but it at least I have a context with which to understand it now. :)
Wednesday, April 30, 2014
Saturday, April 26, 2014
Interesting Article....
I am working on a new post on this topic... :)
http://archive.wired.com/wired/archive/9.12/aspergers_pr.html
""If we could eliminate the genes for things like autism, I think it would be disastrous," says Wilhelmsen. "The healthiest state for a gene pool is maximum diversity of things that might be good."
One of the first people to intuit the significance of this was Asperger himself - weaving his continuum like a protective blanket over the young patients in his clinic as the Nazis shipped so-called mental defectives to the camps. "It seems that for success in science and art," he wrote, "a dash of autism is essential."
For all we know, the first tools on earth might have been developed by a loner sitting at the back of the cave, chipping at thousands of rocks to find the one that made the sharpest spear, while the neurotypicals chattered away in the firelight. Perhaps certain arcane systems of logic, mathematics, music, and stories - particularly remote and fantastic ones - have been passed down from phenotype to phenotype, in parallel with the DNA that helped shape minds which would know exactly what to do with these strange and elegant creations."
http://archive.wired.com/wired/archive/9.12/aspergers_pr.html
""If we could eliminate the genes for things like autism, I think it would be disastrous," says Wilhelmsen. "The healthiest state for a gene pool is maximum diversity of things that might be good."
One of the first people to intuit the significance of this was Asperger himself - weaving his continuum like a protective blanket over the young patients in his clinic as the Nazis shipped so-called mental defectives to the camps. "It seems that for success in science and art," he wrote, "a dash of autism is essential."
For all we know, the first tools on earth might have been developed by a loner sitting at the back of the cave, chipping at thousands of rocks to find the one that made the sharpest spear, while the neurotypicals chattered away in the firelight. Perhaps certain arcane systems of logic, mathematics, music, and stories - particularly remote and fantastic ones - have been passed down from phenotype to phenotype, in parallel with the DNA that helped shape minds which would know exactly what to do with these strange and elegant creations."
Thursday, April 24, 2014
This is J, alone again on the playground yesterday.
Just to be clear, he's completely safe and supervised. Just playing alone. I don't expect the teachers to constantly be watching to make sure he's playing with someone. I know firsthand that it's impossible to get him to stay with the other kids. I can't even really get him to stay with us when we play outside at home. He's always disappearing to go back inside or be someplace by himself.
I watched a whole scene go down yesterday where he was happily playing on the boat and talking to himself. A whole group of kids came over pretending to be sharks. As soon as they all arrived, he jumped down and walked away. He went over to a picnic table on the far end of the playground and put his head down. Then he got down and played alone on this bike for awhile.
At one point, a little girl from his class came over and, though I couldn't hear what she was saying, I could tell she was trying to get him to play. He kept shrugging her off and walking away. She was relentless for awhile, but eventually gave up and walked away. (She actually went over to find their teacher to tell her J was sad, I think... because shortly after that, the teacher came over and talked to him.)
He just has NO interest in his classmates. None. He adores adults and will hang with them and talk to them when they are available. But other kids are not his thing. This is part of what we worry about going forward. You can't be in a kindergarten class of 20 kids and not interact. When he does interact, it's often in a negative way or it's obvious he just does not understand how to get them to play or join their games.
It's an odd thing to watch happen. I wouldn't believe it unless I saw it for myself. A whole playground full of kids running around and he purposely separates from everyone. Is it because he wants to be alone? Is it because he gives up or just can't keep up with them socially? Is it because what they are doing doesn't interest him? They aren't playing a game he has learned? (he play things in a very scripted way, generally the same way every time) Could be all of this. More answers I don't have....
Just to be clear, he's completely safe and supervised. Just playing alone. I don't expect the teachers to constantly be watching to make sure he's playing with someone. I know firsthand that it's impossible to get him to stay with the other kids. I can't even really get him to stay with us when we play outside at home. He's always disappearing to go back inside or be someplace by himself.
I watched a whole scene go down yesterday where he was happily playing on the boat and talking to himself. A whole group of kids came over pretending to be sharks. As soon as they all arrived, he jumped down and walked away. He went over to a picnic table on the far end of the playground and put his head down. Then he got down and played alone on this bike for awhile.
At one point, a little girl from his class came over and, though I couldn't hear what she was saying, I could tell she was trying to get him to play. He kept shrugging her off and walking away. She was relentless for awhile, but eventually gave up and walked away. (She actually went over to find their teacher to tell her J was sad, I think... because shortly after that, the teacher came over and talked to him.)
He just has NO interest in his classmates. None. He adores adults and will hang with them and talk to them when they are available. But other kids are not his thing. This is part of what we worry about going forward. You can't be in a kindergarten class of 20 kids and not interact. When he does interact, it's often in a negative way or it's obvious he just does not understand how to get them to play or join their games.
It's an odd thing to watch happen. I wouldn't believe it unless I saw it for myself. A whole playground full of kids running around and he purposely separates from everyone. Is it because he wants to be alone? Is it because he gives up or just can't keep up with them socially? Is it because what they are doing doesn't interest him? They aren't playing a game he has learned? (he play things in a very scripted way, generally the same way every time) Could be all of this. More answers I don't have....
Wednesday, April 23, 2014
I can count on one hand the number of times I have cried about something related to these kid issues we have been dealing with the last few years. For the most part, I'm pretty matter-of-fact about it all with an "Okay! Let's Google the heck out this and get to work!" attitude.
I remember each and every time I have cried throughout this journey though and it really had been quite awhile... until yesterday.
I had just walked out of a meeting (the one I mentioned in one of the earlier posts) to plan what we were going to request from the county for J in the coming school year. There was a lot of discussion about 4s programs, special education and IEPs, pragmatic speech and social skills.... it all gets so technical and cold and there are SO many pages of paperwork. I have to keep reminding myself that this child they are all discussing is still the same child I know. Nothing has changed. All the special words for everything always make it sound so much worse than it is. How on earth did B make it through without all this?!
Reality check: Like his big brother, J is an amazing, smart, funny little guy who is going to be FINE! He just needs a little help with some things now so life will be easier on down the road.
I get it though. We are tailoring it all to make the best case for getting him the most services we can. I'm learning the rules of the game.... but it's still hard to listen to it all sometimes.
My face must have given away all that was brimming under the surface, because no sooner had I signed the last paper they handed me, than J's teacher jumped up and walked me into another room, shut the door behind us and gave me a huge hug. The floodgates opened.
Then, sitting face to face on a red plastic cube chair with one of the few people who really gets it and has walked this road with us for the last two years, it all came out.
What would happen if we just walked away right now? What would he be like in kindergarten without intervention next year? Why will he struggle in kindergarten? How will teachers see him? What will they think? Will he need an aide? Will he go into a special classroom? Will he be okay with other kids? What would he do? How will he act? Will he be okay academically? How on earth did B get through without any of the help J is getting? HOW?
There are no answers to these questions right now; but just putting them out there gives me some feeling of control back.
I cried for all the answers we don't have.
I cried because it's real now. For two years, he played with teachers and therapists in our home and he was challenging and quirky, but it was kind of fun "work", honestly -- and no one ever said the words, "He has autism." It was real before in that we knew something was different, but NOT real in that we didn't truly know what that was. Part of me held out hope that he would age out of Infants and Toddlers and that would be the end of it.
I cried because I love him the way he is, I don't need to fix him, and a small part of me wants this all to go away.
I cried for B, who didn't get all the help that J is getting and suffered for it later -- all because I didn't listen my instincts that something was wrong.
I cried knowing that it's BECAUSE of B, I HAVE to keep at this with for J.
I cried for the end of this season. Because after J's 4th birthday, everything is going to change. He'll move into a county preschool setting, most likely. Very different from the home-based services and now small-group we have gotten so comfortable with. And frankly, I'm about as good with change as my son, which is to say, not so wonderful. So... there's that too.
And I think I just plain needed to cry for awhile.
But I'm good now..... I think. So let's get to work!
I remember each and every time I have cried throughout this journey though and it really had been quite awhile... until yesterday.
I had just walked out of a meeting (the one I mentioned in one of the earlier posts) to plan what we were going to request from the county for J in the coming school year. There was a lot of discussion about 4s programs, special education and IEPs, pragmatic speech and social skills.... it all gets so technical and cold and there are SO many pages of paperwork. I have to keep reminding myself that this child they are all discussing is still the same child I know. Nothing has changed. All the special words for everything always make it sound so much worse than it is. How on earth did B make it through without all this?!
Reality check: Like his big brother, J is an amazing, smart, funny little guy who is going to be FINE! He just needs a little help with some things now so life will be easier on down the road.
I get it though. We are tailoring it all to make the best case for getting him the most services we can. I'm learning the rules of the game.... but it's still hard to listen to it all sometimes.
My face must have given away all that was brimming under the surface, because no sooner had I signed the last paper they handed me, than J's teacher jumped up and walked me into another room, shut the door behind us and gave me a huge hug. The floodgates opened.
Then, sitting face to face on a red plastic cube chair with one of the few people who really gets it and has walked this road with us for the last two years, it all came out.
What would happen if we just walked away right now? What would he be like in kindergarten without intervention next year? Why will he struggle in kindergarten? How will teachers see him? What will they think? Will he need an aide? Will he go into a special classroom? Will he be okay with other kids? What would he do? How will he act? Will he be okay academically? How on earth did B get through without any of the help J is getting? HOW?
There are no answers to these questions right now; but just putting them out there gives me some feeling of control back.
I cried for all the answers we don't have.
I cried because it's real now. For two years, he played with teachers and therapists in our home and he was challenging and quirky, but it was kind of fun "work", honestly -- and no one ever said the words, "He has autism." It was real before in that we knew something was different, but NOT real in that we didn't truly know what that was. Part of me held out hope that he would age out of Infants and Toddlers and that would be the end of it.
I cried because I love him the way he is, I don't need to fix him, and a small part of me wants this all to go away.
I cried for B, who didn't get all the help that J is getting and suffered for it later -- all because I didn't listen my instincts that something was wrong.
I cried knowing that it's BECAUSE of B, I HAVE to keep at this with for J.
I cried for the end of this season. Because after J's 4th birthday, everything is going to change. He'll move into a county preschool setting, most likely. Very different from the home-based services and now small-group we have gotten so comfortable with. And frankly, I'm about as good with change as my son, which is to say, not so wonderful. So... there's that too.
And I think I just plain needed to cry for awhile.
But I'm good now..... I think. So let's get to work!
Background....
Here are some essays I wrote when this journey started.... the most recent one was written last June and we already have more answers now than we did back then. I think it's getting to be time to write again. ;)
http://www.tobhessays.blogspot.com/2012/07/852.html
http://www.tobhessays.blogspot.com/2013/06/852.html
http://www.tobhessays.blogspot.com/2012/07/852.html
http://www.tobhessays.blogspot.com/2013/06/852.html
Tuesday, April 22, 2014
I had a hard day today. Throughout this journey, I have always waffled back and forth between "My child truly is very different from other children and there is no denying it." and "Yeah, there are some issues, but he's just quirky. Whatever."
Today was more of the latter. Former? Latter? The one I said first. ;)
We had J's IEP transition planning meeting. Really, just a quick paper-signing event, honestly. But all the clinical talk never fails to send me to a bad mental place. Special education choices, what will happen if..." what does he need? what will he qualify for?
I have ALWAYS known my kids were different. Always. Always. Always. I also read a TON, and so I was VERY aware what we saw in our boys was probably in the realm of a spectrum disorder-type issue. Geez, I'm even the one who brought it up to the pediatrician about B two years ago. I guess I just never thought I would really hear anyone ACTUALLY say the words, "Your child has autism." "It's autism." "This is something we see with autistic children." etc.
As much as I have accepted the idea of having kids on the spectrum and become such a proponent of early intervention, sometimes I want to just run away from it all and say, "You know what? This is too much. He's quirky. He's not so great with people all the time and he likes his routines. I can actually really appreciate all of that! Can we just call it quirky and accept it for what it is?" His smallish world is really very accepting of that! We're all good with it.
I know that won't help anything though. Even if the rest of the world were totally accepting of his quirks as we are, he NEEDS to work on this. We NEED the help and the support so he can reach his potential both in school and in life.
I just have these moments where it's so undeniably REAL and daunting and there are so many unknowns -- where I feel like it's ridiculously unfair that my kids even HAVE to conform to these social expectations.
I don't like not knowing what choices are right and how things will turn out. I THINK it will be okay, maybe? I hope. I hope we make the right decisions....
Today was more of the latter. Former? Latter? The one I said first. ;)
We had J's IEP transition planning meeting. Really, just a quick paper-signing event, honestly. But all the clinical talk never fails to send me to a bad mental place. Special education choices, what will happen if..." what does he need? what will he qualify for?
I have ALWAYS known my kids were different. Always. Always. Always. I also read a TON, and so I was VERY aware what we saw in our boys was probably in the realm of a spectrum disorder-type issue. Geez, I'm even the one who brought it up to the pediatrician about B two years ago. I guess I just never thought I would really hear anyone ACTUALLY say the words, "Your child has autism." "It's autism." "This is something we see with autistic children." etc.
As much as I have accepted the idea of having kids on the spectrum and become such a proponent of early intervention, sometimes I want to just run away from it all and say, "You know what? This is too much. He's quirky. He's not so great with people all the time and he likes his routines. I can actually really appreciate all of that! Can we just call it quirky and accept it for what it is?" His smallish world is really very accepting of that! We're all good with it.
I know that won't help anything though. Even if the rest of the world were totally accepting of his quirks as we are, he NEEDS to work on this. We NEED the help and the support so he can reach his potential both in school and in life.
I just have these moments where it's so undeniably REAL and daunting and there are so many unknowns -- where I feel like it's ridiculously unfair that my kids even HAVE to conform to these social expectations.
I don't like not knowing what choices are right and how things will turn out. I THINK it will be okay, maybe? I hope. I hope we make the right decisions....
So this weekend was kind of a whirlwind one for our family. We ran from place to place, each of which had its own challenges and behavior expectations. We had also been taking the break from school as an opportunity to buckle down on some potty training consistency for J. (which is a whole separate post....but anyway)
J's "preferred item/activity" (as they call it) is his Nintendo DS. I truly wish it were anything but that, but that's what it is, so there you go. He WOULD play it all day, left to his own devices, but, because we are at least TRYING to be decent parents, obviously, we limit it. Because he loves it so much, we use it for motivation (such as potty training) and for when he needs a break from everything.
One of our destinations this weekend was our niece's 3rd birthday party. It was just family, but even with just family, it's ten adults and seven children from newborn - 10. To put it mildly, it's chaos. VERY... LOUD.... CHAOS. (even *I* find it a challenging to handle sometimes.... so I KNOW J does)
He actually did really well for quite awhile. He played in the backyard alongside his cousins pretty nicely, but after about 30-40 minutes of that, he started acting out. At one point, he swatted at the birthday girl for asking him to move out of the way so she could swing. He didn't want anything to do with the other kids at that point. He asked to go inside. I took him in and he immediately retreated to a corner with his DS.
Now, if you had stumbled upon this scene at a party, you would probably immediately think to yourself, "What kind of parent lets their child play DS at a birthday party? That's ridiculous!" Believe me, I think that all the time and it's MY child; but it relaxes him and gets him back to a place where he can handle more demands, social and otherwise. He did okay after that. Made it through presents and cake and saying goodbye nicely to everyone.
I have spent a lot of time over the years one-on one-with my two kids who need this time away from too much stimulation. We're always the people in a quiet room or in a corner at some point during a party. My husband and I once took turns sitting outside of the Mexican restaurant in Epcot while everyone else ate dinner because B couldn't handle anything about it... the smell, the ambient noise, the lighting... it was just too much. As someone who very much values peace and quiet in the midst of chaos, I sort of don't mind this particular aspect of my kids. On the other hand, it would be nice sometimes to be able to take for granted that when we go to a social event, he would get excited about being with the other kids and just go off and play happily like everyone else.
Anyway, this is just another example of something that is subtly different about J and lots of other kids that you might either not notice, or stumble upon and misjudge what is going on.
Somewhat related, here's another interesting video I stumbled across.
They've been telling me that J may need assistance when he gets to elementary school... (I'm hoping not, but no one really knows anything for sure yet. It's kind of a wait and see game)
This video shows some of what I imagine we might encounter with him in school (probably to a lesser degree.) I post it partially because I thought it was neat that they use a DS for this little girl as something to motivate her. I also just love this series of videos and how well they explain certain aspects of ASD that people might not be aware of.... like how typical kids get are motivated by the social aspect of school and get their "breaks" from social experiences .... and how ASD kids may NOT be motivated by that. I know J is certainly not at all! B is only just this year really interested in that in 4th grade! So that has most definitely been our experience.
Check out the other videos in that series if you are interested. They aren't all about high-functioning ASD kids. In fact, most are not. But you'll learn a lot!
Edited to Add: I just realized I posted the same video here AND below. LOL! Oh well, it's a good one. ;)
J's "preferred item/activity" (as they call it) is his Nintendo DS. I truly wish it were anything but that, but that's what it is, so there you go. He WOULD play it all day, left to his own devices, but, because we are at least TRYING to be decent parents, obviously, we limit it. Because he loves it so much, we use it for motivation (such as potty training) and for when he needs a break from everything.
One of our destinations this weekend was our niece's 3rd birthday party. It was just family, but even with just family, it's ten adults and seven children from newborn - 10. To put it mildly, it's chaos. VERY... LOUD.... CHAOS. (even *I* find it a challenging to handle sometimes.... so I KNOW J does)
He actually did really well for quite awhile. He played in the backyard alongside his cousins pretty nicely, but after about 30-40 minutes of that, he started acting out. At one point, he swatted at the birthday girl for asking him to move out of the way so she could swing. He didn't want anything to do with the other kids at that point. He asked to go inside. I took him in and he immediately retreated to a corner with his DS.
Now, if you had stumbled upon this scene at a party, you would probably immediately think to yourself, "What kind of parent lets their child play DS at a birthday party? That's ridiculous!" Believe me, I think that all the time and it's MY child; but it relaxes him and gets him back to a place where he can handle more demands, social and otherwise. He did okay after that. Made it through presents and cake and saying goodbye nicely to everyone.
I have spent a lot of time over the years one-on one-with my two kids who need this time away from too much stimulation. We're always the people in a quiet room or in a corner at some point during a party. My husband and I once took turns sitting outside of the Mexican restaurant in Epcot while everyone else ate dinner because B couldn't handle anything about it... the smell, the ambient noise, the lighting... it was just too much. As someone who very much values peace and quiet in the midst of chaos, I sort of don't mind this particular aspect of my kids. On the other hand, it would be nice sometimes to be able to take for granted that when we go to a social event, he would get excited about being with the other kids and just go off and play happily like everyone else.
Anyway, this is just another example of something that is subtly different about J and lots of other kids that you might either not notice, or stumble upon and misjudge what is going on.
Somewhat related, here's another interesting video I stumbled across.
They've been telling me that J may need assistance when he gets to elementary school... (I'm hoping not, but no one really knows anything for sure yet. It's kind of a wait and see game)
This video shows some of what I imagine we might encounter with him in school (probably to a lesser degree.) I post it partially because I thought it was neat that they use a DS for this little girl as something to motivate her. I also just love this series of videos and how well they explain certain aspects of ASD that people might not be aware of.... like how typical kids get are motivated by the social aspect of school and get their "breaks" from social experiences .... and how ASD kids may NOT be motivated by that. I know J is certainly not at all! B is only just this year really interested in that in 4th grade! So that has most definitely been our experience.
Check out the other videos in that series if you are interested. They aren't all about high-functioning ASD kids. In fact, most are not. But you'll learn a lot!
Edited to Add: I just realized I posted the same video here AND below. LOL! Oh well, it's a good one. ;)
Monday, April 21, 2014
Interesting Video....
This whole series is actually pretty great....
But here's an interesting one about school.
https://www.youtube.com/watch?v=riS53sCbLfo
The comments on the video are worth noting too. This particular one hit home:
"To the people out there who think this is just "rude" behavior, I get it. My son was just diagnosed with ASD after years of struggling with similar behavior. All kids will test authority at some point. So when is it the autism and when is he just being a pill? Can the two be separated? I'm guessing many kids with ASD appear to be rude. I'm not sure I can tell the difference but after watching this video I think it should help to open up the minds of some people to the possibility that's it's a little more complicated than simple behavior problems for many of us who are struggling with autistic children."
The comments on the video are worth noting too. This particular one hit home:
"To the people out there who think this is just "rude" behavior, I get it. My son was just diagnosed with ASD after years of struggling with similar behavior. All kids will test authority at some point. So when is it the autism and when is he just being a pill? Can the two be separated? I'm guessing many kids with ASD appear to be rude. I'm not sure I can tell the difference but after watching this video I think it should help to open up the minds of some people to the possibility that's it's a little more complicated than simple behavior problems for many of us who are struggling with autistic children."
Wednesday, April 16, 2014
Child's Play....
On Monday, I got to the preschool a few minutes early, as I typically do, so I could sit on the steps near the playground and watch J play. I've done this with all my boys over the years. It's one of only a few opportunities I really get to glimpse their preschool world.
This particular day, I searched the playground, trying to remember what I had dressed him in that morning. Finally, I found him, wandering aimlessly around the little cement court, far away from everyone else. On the main part of the playground, the other children screeched and ran around happily. Some of the little girls skipped by holding hands. Everyone, it seemed, was playing with someone else.... except for J.
He seemed content enough. But it was sad. This is when I really get slapped in the face with how different he can be. At home, it's easier to pretend nothing is all that different about him. When he is among peers, there is no pretending I don't see it after all I've learned the last couple of years.
The school day before that, I showed up and found him playing in the playhouse with his teacher from Infants and Toddlers, who had come for one of her visits. There were two other little boys and at first, they seemed to be all playing together, but when you looked more carefully at the situation, J was only on the outskirts of the game, talking to himself. Occasionally, he would join them in running around the house and going through the tunnel, and then he would tune them out again and do his own thing, while they played in the vicinity.
Again, he was happy, so why am I sad?
I'm sad because his natural inclination is to play alone (except at home with his brothers sometimes). He is always doing his own thing or hanging with me, while other kids are excited to play with each other. It's not that other children don't WANT to play with him. It's that he doesn't know how to play with THEM.
I'm sad because on the surface, the play happening in the latter scenario actually sometimes SEEMS okay and then when you look closely, it's NOT and so few people understand WHY it's not.
I'm sad because I've watched this all play out before with B -- and I am lucky enough (or not?) to have a crystal ball in the form of my 10-year-old son and I can see where this leads without someone to hold his hands teach him the rules other children learn naturally.
You see, if we don't help NOW, eventually, years down the line, he WILL likely care about other kids and their games and he won't know how to enter in, because he didn't pick it up through experience and experimentation when his peers did. He might not able to tell who is even interested in playing with him, or when they don't want to play his game, or if they don't like him. He will not understand what a friend is and may think EVERYONE is a friend... this will lead to some heartbreaking lessons down the road. He will EVENTUALLY figure some of it out, but will always be a little awkward socially, never quite understanding the "rules". We have watched all that and more happen to B...
This is the sort of thing I wish more people grasped about why I worry... and why we work so hard to make sure J gets the help he needs. We have traveled this road before, always knowing there was some kind of disconnect, something different, but not understanding what it really was or what to do to fix it.
I am thankful that with J, we DO understand.
That crystal ball I have also tells me that things will be just fine in the future. J will be okay, just like B is okay.... not without struggles, but definitely okay....
.... and he'll be okay even sooner because of the effort we are putting in NOW.
This particular day, I searched the playground, trying to remember what I had dressed him in that morning. Finally, I found him, wandering aimlessly around the little cement court, far away from everyone else. On the main part of the playground, the other children screeched and ran around happily. Some of the little girls skipped by holding hands. Everyone, it seemed, was playing with someone else.... except for J.
He seemed content enough. But it was sad. This is when I really get slapped in the face with how different he can be. At home, it's easier to pretend nothing is all that different about him. When he is among peers, there is no pretending I don't see it after all I've learned the last couple of years.
The school day before that, I showed up and found him playing in the playhouse with his teacher from Infants and Toddlers, who had come for one of her visits. There were two other little boys and at first, they seemed to be all playing together, but when you looked more carefully at the situation, J was only on the outskirts of the game, talking to himself. Occasionally, he would join them in running around the house and going through the tunnel, and then he would tune them out again and do his own thing, while they played in the vicinity.
Again, he was happy, so why am I sad?
I'm sad because his natural inclination is to play alone (except at home with his brothers sometimes). He is always doing his own thing or hanging with me, while other kids are excited to play with each other. It's not that other children don't WANT to play with him. It's that he doesn't know how to play with THEM.
I'm sad because on the surface, the play happening in the latter scenario actually sometimes SEEMS okay and then when you look closely, it's NOT and so few people understand WHY it's not.
I'm sad because I've watched this all play out before with B -- and I am lucky enough (or not?) to have a crystal ball in the form of my 10-year-old son and I can see where this leads without someone to hold his hands teach him the rules other children learn naturally.
You see, if we don't help NOW, eventually, years down the line, he WILL likely care about other kids and their games and he won't know how to enter in, because he didn't pick it up through experience and experimentation when his peers did. He might not able to tell who is even interested in playing with him, or when they don't want to play his game, or if they don't like him. He will not understand what a friend is and may think EVERYONE is a friend... this will lead to some heartbreaking lessons down the road. He will EVENTUALLY figure some of it out, but will always be a little awkward socially, never quite understanding the "rules". We have watched all that and more happen to B...
This is the sort of thing I wish more people grasped about why I worry... and why we work so hard to make sure J gets the help he needs. We have traveled this road before, always knowing there was some kind of disconnect, something different, but not understanding what it really was or what to do to fix it.
I am thankful that with J, we DO understand.
That crystal ball I have also tells me that things will be just fine in the future. J will be okay, just like B is okay.... not without struggles, but definitely okay....
.... and he'll be okay even sooner because of the effort we are putting in NOW.
Tuesday, April 15, 2014
So What's the Big Deal?
This is another phrase I hear a lot from people. They will listen and agree that two of my kids have these sort of quirky things about them and can see, quite obviously usually once I point it out, the social weaknesses. The inevitable question is something like, "Yeah, so? I hate loud parties and the texture of jello makes me gag ... and I'm okay?"
On one hand, I completely agree. I'm quirky too. (which is a separate post altogether!) Who isn't in some way? All people have varying levels of social IQ. And who DOESN'T have some kind of sensory preference or aversion? What does it all matter in the grand scheme of things? We're all different and everyone's a little weird. Why not just let them be who they are?
You know, more than anything, I do want my children be allowed to be who they are because they are AWESOME. (and honestly, who they are can't be changed much anyway!) But I also want them to be able to cope with the social expectations of the world in which they live because, as unfair and overwhelming as these expectations sometimes seem for people with social deficits, they are things you have to learn to at least some degree in order to get by in life. The world can be a harsh place.
Still, I do like the idea of seeing it not as a disability, but as a different way of thinking.
I found this article that I thought was really interesting that addresses that idea... here's a section I really liked that describes some of the differences you can see in my boys. (sidenote: this is an old article. Aspergers "doesn't exist" anymore... it has all been lumped into the heading of Autism Spectrum Disorder.)
On one hand, I completely agree. I'm quirky too. (which is a separate post altogether!) Who isn't in some way? All people have varying levels of social IQ. And who DOESN'T have some kind of sensory preference or aversion? What does it all matter in the grand scheme of things? We're all different and everyone's a little weird. Why not just let them be who they are?
You know, more than anything, I do want my children be allowed to be who they are because they are AWESOME. (and honestly, who they are can't be changed much anyway!) But I also want them to be able to cope with the social expectations of the world in which they live because, as unfair and overwhelming as these expectations sometimes seem for people with social deficits, they are things you have to learn to at least some degree in order to get by in life. The world can be a harsh place.
Still, I do like the idea of seeing it not as a disability, but as a different way of thinking.
I found this article that I thought was really interesting that addresses that idea... here's a section I really liked that describes some of the differences you can see in my boys. (sidenote: this is an old article. Aspergers "doesn't exist" anymore... it has all been lumped into the heading of Autism Spectrum Disorder.)
Asperger's syndrome (AS) and High-Functioning Autism (HFA)
Autism is diagnosed on the basis of abnormalities in the areas of social development, communicative development, and imagination, together with marked repetitive or obsessional behaviour or unusual, narrow interests . Individuals with autism may have an IQ at any level. By convention, if an individual with autism has an IQ in the normal range (or above), they are said to have 'high-functioning autism' (HFA). If an individual meets all of the criteria for HFA except communicative abnormality/history of language delay, they are said to have Asperger's syndrome (AS). In this paper, we focus on AS and HFA since we accept that an individual who is lower-functioning necessarily has a disability in the form of retardation. What is not clear, and therefore the subject of the debate presented next, is whether individuals with AS/HFA necessarily have a disability. For the present purposes, we consider the arguments in relation to AS and HFA, without attempting to draw any distinction between these.
The arguments for viewing AS/HFA as a difference rather than a disability
- The child spends more time involved with objects and physical systems than with people (Swettenham et al., 1998);
- The child communicates less than other children do;
- The child tends to follow their own desires and beliefs rather than paying attention to, or being easily influenced by, others’ desires and beliefs (Baron- Cohen, Leslie & Frith, 1985);
- The child shows relatively little interest in what the social group is doing, or being a part of it (Bowler, 1992; Lord, 1984);
- The child is very accurate at perceiving the details of information (Plaisted, O'Riordan & Baron-Cohen, 1998a; Plaisted, O'Riordan & Baron-Cohen, 1998b)
- The child notices and recalls things other people may not (Frith, 1989);
- The child’s view of what is relevant and important in a situation may not coincide with others (Frith, 1989);
- (dates, . The child may be fascinated by patterned material, be it visual (shapes), numeric timetables), alphanumeric (number plates), or lists (of cars, songs, etc.);
- The child may be fascinated by systems, be they simple (light switches, water taps), a little more complex (weather fronts), or abstract (mathematics);
- The child may have a strong drive to collect categories of objects (e.g., bottletops, train maps), or categories of information (types of lizard, types of rock, types of fabric, etc.); and
- The child has a strong preference for experiences that are controllable rather than unpredictable.
Those are NOT negative things and some are actually gifts!
If you have never heard a three-year-old read a book out loud, or tell you how to connect your computer to the wireless network -- if you have never watched an enraptured six-year-old with his nose pressed against the glass of a shark tank rattling off the finer details of shark anatomy to anyone within earshot, or heard him tell you with as much passion as any scientist why space and black holes are so interesting, then you have not seen the fascinating beauty these differently wired brains can hold.
Social disability? Maybe. Challenging at times? YOU BET. The rest? Wonderful differences that keep our lives (and our world) interesting.
Monday, April 14, 2014
How Did You End up Here?
A FB friend posted this yesterday. I had been thinking about creating this blog space all weekend, but this is what inspired me to actually do it.
So HOW did we ever get here? I get that question a lot from people who are genuinely interested... and from some who meet our son and just don't understand why we have pursued services at all. And I am always happy to tell our story, both for the sake of J and and our older son B and to hopefully give others the encouragement they need to listen to their instincts about their children.
It would make my life easy if I could take people back in time with me to see what our youngest son looked like 1-1/2-2 years ago before and when we had just begun early intervention. From that time, the meltdowns are what stand out the most in my mind. They would be triggered by the most random of events, or even non-events and would last for upwards of 40 minutes. During that time, I would have to keep moving him away from walls and furniture because he would repeatedly throw himself into them, while screaming as if he were possessed.
There was also the talking, or lack thereof. At 16 months, he wasn't trying to babble like other babies do. The usual 'bababa" 'gagaga"babytalk wasn't there. There is a lot you can chalk up to a child just being a late talker, but the lack of experimenting with sounds was a red flag for me, especially once it went beyond the timeframe when our late-talking oldest had started finally saying words.
It was maybe two months into early intervention and when we really started to think there was more than just a speech delay. I knew enough to quickly pick up on some concerns our Infants and Toddlers teacher saw and even though she wasn't saying it, figured that she had ASD on her radar. It had not really occurred to me as a possibility until then and my husband and I really didn't want to even consider it.
We reached a low point with it all when our son started waking up regularly at night with what at first seemed like night terrors. As third-time parents, we had plenty of experience with those, so we didn't think much of it at first. There was something different about these episodes though. Much like during meltdowns, he would hurl his little body into the walls and furniture. He would also try to swan dive from his bed, all while screaming at the top of his lungs. It was truly a frightening thing to witness, almost as if he was fighting against something we couldn't see. I remember looking at my husband one of these nights and just saying, "They're right you know. Something is definitely wrong." Also during that period of time, the meltdowns ramped up to 5-6 a day.
After a month or so, it ended very abruptly and he woke up one morning, quite literally, a different child. The words came fast and furious after that. Looking back, my theory is that that particularly trying period of time was when the connections were all happening in his brain all at once --- likely, at least partially, as a direct result of the intervention he had been getting. I often wonder if this would have happened without it.
The expressive speech rapidly become a non-issue, but social red flags lingered, and still do, as does perseveration and some trouble with eye contact and back and forth conversation. He also is still often very rigid in his routines, in his play, and in his expectations of others. Playing with peers is not something he seeks out often or does appropriately. Things have improved a LOT in a the last year, but all of that is still there, to some extent. We continue to work on all of these things with the early intervention folks as well as at home and we see steady progress.
To most, he just appears like a stubborn, willful kid who challenges us. So many remind me he is only three and his behavior is still age appropriate. Plus, there's always the old standby -- "He's a boy!" They're right in some respects. Tantrums, parallel play and not-so-finely-honed conversational skills ARE still kind of appropriate for some three-year-olds. But soon enough, he will be four.... five... six.... and his peers will have moved on from those things. Both our experience, and those who work with him, tell us he will be left behind, forcing him to play social catch-up in 2nd or 3rd grade, when peers are often less than forgiving of those differences.
So in short, that is how we "ended up here". It has been a learning experience, for sure.
I am immensely grateful to those who have had so much patience with us, who have taught us what they know, put the time in to tirelessly help our son, and been listening ears when it all gets confusing. The other moms in the autism community have been a wonderful resource as well and are a goldmine of advice and tips. It's invaluable to have people who really get it in a way no one else can.
My goal these days is to become as educated as I possibly can so I can navigate this world in an articulate and intelligent way and get my children what they need when they need it.
It has opened up a whole new world of interest for me too and given me new purpose. My kids are so quirky, so bright, and such NEAT people. I want to learn as much as I can about what makes them tick and I want to share their uniqueness with others. It's a lofty goal, but I would love to see a world that meets them where they are, that understands what makes them different and so very special....
So HOW did we ever get here? I get that question a lot from people who are genuinely interested... and from some who meet our son and just don't understand why we have pursued services at all. And I am always happy to tell our story, both for the sake of J and and our older son B and to hopefully give others the encouragement they need to listen to their instincts about their children.
It would make my life easy if I could take people back in time with me to see what our youngest son looked like 1-1/2-2 years ago before and when we had just begun early intervention. From that time, the meltdowns are what stand out the most in my mind. They would be triggered by the most random of events, or even non-events and would last for upwards of 40 minutes. During that time, I would have to keep moving him away from walls and furniture because he would repeatedly throw himself into them, while screaming as if he were possessed.
There was also the talking, or lack thereof. At 16 months, he wasn't trying to babble like other babies do. The usual 'bababa" 'gagaga"babytalk wasn't there. There is a lot you can chalk up to a child just being a late talker, but the lack of experimenting with sounds was a red flag for me, especially once it went beyond the timeframe when our late-talking oldest had started finally saying words.
It was maybe two months into early intervention and when we really started to think there was more than just a speech delay. I knew enough to quickly pick up on some concerns our Infants and Toddlers teacher saw and even though she wasn't saying it, figured that she had ASD on her radar. It had not really occurred to me as a possibility until then and my husband and I really didn't want to even consider it.
We reached a low point with it all when our son started waking up regularly at night with what at first seemed like night terrors. As third-time parents, we had plenty of experience with those, so we didn't think much of it at first. There was something different about these episodes though. Much like during meltdowns, he would hurl his little body into the walls and furniture. He would also try to swan dive from his bed, all while screaming at the top of his lungs. It was truly a frightening thing to witness, almost as if he was fighting against something we couldn't see. I remember looking at my husband one of these nights and just saying, "They're right you know. Something is definitely wrong." Also during that period of time, the meltdowns ramped up to 5-6 a day.
After a month or so, it ended very abruptly and he woke up one morning, quite literally, a different child. The words came fast and furious after that. Looking back, my theory is that that particularly trying period of time was when the connections were all happening in his brain all at once --- likely, at least partially, as a direct result of the intervention he had been getting. I often wonder if this would have happened without it.
The expressive speech rapidly become a non-issue, but social red flags lingered, and still do, as does perseveration and some trouble with eye contact and back and forth conversation. He also is still often very rigid in his routines, in his play, and in his expectations of others. Playing with peers is not something he seeks out often or does appropriately. Things have improved a LOT in a the last year, but all of that is still there, to some extent. We continue to work on all of these things with the early intervention folks as well as at home and we see steady progress.
To most, he just appears like a stubborn, willful kid who challenges us. So many remind me he is only three and his behavior is still age appropriate. Plus, there's always the old standby -- "He's a boy!" They're right in some respects. Tantrums, parallel play and not-so-finely-honed conversational skills ARE still kind of appropriate for some three-year-olds. But soon enough, he will be four.... five... six.... and his peers will have moved on from those things. Both our experience, and those who work with him, tell us he will be left behind, forcing him to play social catch-up in 2nd or 3rd grade, when peers are often less than forgiving of those differences.
So in short, that is how we "ended up here". It has been a learning experience, for sure.
I am immensely grateful to those who have had so much patience with us, who have taught us what they know, put the time in to tirelessly help our son, and been listening ears when it all gets confusing. The other moms in the autism community have been a wonderful resource as well and are a goldmine of advice and tips. It's invaluable to have people who really get it in a way no one else can.
My goal these days is to become as educated as I possibly can so I can navigate this world in an articulate and intelligent way and get my children what they need when they need it.
It has opened up a whole new world of interest for me too and given me new purpose. My kids are so quirky, so bright, and such NEAT people. I want to learn as much as I can about what makes them tick and I want to share their uniqueness with others. It's a lofty goal, but I would love to see a world that meets them where they are, that understands what makes them different and so very special....
Sunday, April 13, 2014
For Real...
My three-year-old son received an official diagnosis of Autism Spectrum Disorder yesterday.
This did not come as a surprise to anyone. It's something we have been suspecting, assuming, and working under the premise of for at least two years.
So when I say he received an official diagnosis, all I really mean is that THIS is now a part of my ever-growing file.
There is absolutely nothing new. In fact, the things we have been dealing with with him, we have really been dealing with for an entire decade because he is the mini-me of his oldest brother, and in many ways, actually less challenging.
BUT, the weight of the report in my hand... those codes... those words.... "Requiring substantial support...." Yes. It's real now.
I will be honest, there are times I have felt like a bit of an intruder in the autism community. Yes, we have challenges, but so many others have bigger ones. It was hard in the beginning, for me to even accept services from Infants and Toddlers for my son without feeling a little guilty, because most people are quick to say he looks "fine". They don't understand why we have even pursued any of it. It often takes me having the same conversations with his service providers over and over again to just to give me the strength, words, and motivation to keep fighting against the current of people who just do not understand why I worry.
The psychologist yesterday asked me at the end of the meeting what I was thinking and I told her all of that. Her reply has stayed with me since yesterday. She reminded me that it's all relative. I see the struggles of other children and their parents and to me it looks ten times harder than what I deal with; but that doesn't make our struggles any less real.... that other parents with typical children are seeing what we have to do every day and it looks no less challenging.
And all the way home, I thought about that. I thought of all the ways ASD has affected our lives without us even thinking about it. We have spent ten years accommodating and changing plans and walking on eggshells with two different children. We've navigated countless meltdowns, sensory issues, and fears. We are always the people at the party with a child who is upset for a reason no one understands. We've had our parenting judged because we have picky eaters, or because our children don't always know how to answer questions, and can't always carry on a two-way conversation, or think to say hello and goodbye. When we make plans, we always have to consider if something will set someone off or if we can manage an event with lots of people. We have foregone more activities than I can even count for the sake of our kids who just can't handle certain things. The list goes on and on.
And you know what? I've never given it much of a second thought. It's not always easy, but it's just how it is and how it has always been. We don't know what it's like to live any differently. When I add it all up like that though... well, it sounds like an exhausting way to live....
....so I guess it really is all relative.
Anyway, so I started this blog because I have learned so much the last couple years on our journey.... so much I want to share with others about my kids and kids like them.
I see so many people who do NOT GET what high-functioning autism means and it frustrates me. There are so many kids I see who remind me of my own and could benefit from early intervention, parents who think there might be something wrong but don't seek help because people who SHOULD know tell them their kids are "fine" and make them feel silly for worrying. I want people to understand that even when there isn't "intellectual impairment", as with my sons, the social (and other) struggles with high-functioning ASD are VERY, VERY real and just as hard to deal with as a parent.
I'm not really sure where this road is leading, but I hope I can help educate in some small way by sharing our stories....
....so I guess it really is all relative.
Anyway, so I started this blog because I have learned so much the last couple years on our journey.... so much I want to share with others about my kids and kids like them.
I see so many people who do NOT GET what high-functioning autism means and it frustrates me. There are so many kids I see who remind me of my own and could benefit from early intervention, parents who think there might be something wrong but don't seek help because people who SHOULD know tell them their kids are "fine" and make them feel silly for worrying. I want people to understand that even when there isn't "intellectual impairment", as with my sons, the social (and other) struggles with high-functioning ASD are VERY, VERY real and just as hard to deal with as a parent.
I'm not really sure where this road is leading, but I hope I can help educate in some small way by sharing our stories....
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