autism at home: Recent Episodes
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Do you remember when you had your babies? And when they were sleepy or cranky or colicky you would go through the list of things-to-do in your head to make them stop crying? Check the diaper. Bust out a booby or a bottle. Wrap them up like a little burrito and rock them back into blissful slumber. This was my checklist. We used to swaddle up those babies so tight. They would thrash and yell until eventually they would tired themselves out. Eventually they just stopped fighting and would lie there on the bed, whimpering or even going immediately silent, and let us swaddle them up tight. It was pretty awesome.
There's a "hugging" machine that people with autism can use to help calm their sensory system. I believe it was Temple Grandin who invented the machine. It gently but tightly squeeeeezes the body and helps to "relax" the nervous system. I relate to it like this: I used to have braces when I was a teenager. Always after they were tightened they throbbed for days and days. And sometimes I would bite down as hard as I could because the relief from un-clenching felt so much better than the throbbing pain of before. I imagine it might work something like that. Anyway, we were taught to squeeze our little guy into a ball when he went into meltdown mode. We had to do this a lot when he first started his early intervention (a little after 2 yrs old). Boy did he struggle and fight. So obviously I didn't think he liked it and I believed it just didn't work for us.
But...
Lately we've been having a lot of meltdowns. I think they've surged in numbers but for what reason I don't really know. Maybe he's going through a growth spurt and his little sensory system is all messed up. So my husband started swaddling him again. I didn't think it would work since he struggled against it so much at other times during meltdowns. But I think it's been working. In fact I became convinced yesterday when I had to swaddle him myself. I expected struggling and screaming but he seemed to realize what I was doing and just went limp, allowing me to wrap him up tight. Then I picked him up like a baby and just gently rocked him. It took him a while still to recompose himself - the whole thing probably lasted about an hour - but all while he was swaddled he was relatively quiet and calm. I could tell he was trying to hard to relax and stop crying. My heart just melted.
So I guess now that he's older and perhaps more aware of his own tendencies and difficulties, he's realizing the benefit of us doing something like swaddling him. Personally I was shocked to find that it worked at his age (almost 4 yr). But even if it doesn't work every single time he has a rage, I am definitely turning to this method of calming, first thing.
Topics: Preschool, Special Education, potty training, and wrestling.
music by: Jonathan Coulton
I attended a meeting last week about IEP's and what to expect. There was SO MUCH information we were given. I had already attended a few of them for my ASD Littles but knew that things were only going to get more challenging as they get older, so I was hoping to learn more. Well... I have enough reading material to last me for a very long time, as you can see from the picture.
I joked to my husband that we learned about policy, laws, laws for those laws and policies, protocol, and various ridiculous acronyms. Alphabet soup! Anyway I have a ton of researching and reading to do. The sad part is that none of this information is truly practical. What we parents want to know about are anecdotal, scenarios, "what do we do if...", and etc. Those are the classes I think we need.
When we go into those IEP meetings sometimes it's just overwhelming with a handful of "professionals" talking to each other about what to do, as opposed to bringing you into the conversation and talking WITH you. Plus, as a parent of special needs kids you might be overcome emotionally thinking about them and the tough time they're having. There are also the pressures on you to fight for them and get the help they need, but you don't even know WHAT they need... there's just a lot of crap thrown at you all at once.
I think a parent group would be a good thing for me - a chance to talk to others and share stories, especially the horror stories. Believe it or not, parent groups are hard to come by.
Well we were able to get into a half-day preschool class across town. So yay for that.
Andrew had his first day on Wednesday and it didn't go so well. This is pretty much what happened....
He was playing by himself, doing what he wanted to do, then at some point it became time for a group activity and he didn't want to join in. Then at some point after that he threw a huge tantrum and I had to be called to come and pick him up.
But I have a few questions that I don't think they would have been able to answer because they don't know Andrew like I know Andrew. For example, sometimes with auties they need to complete a task before they start a new one. So I was wondering if maybe he tried to tell the teachers something about whatever he was trying to do, then nobody understood him because he still doesn't speak very good, and at that point the frustration of being "ripped" away from whatever he was doing would have sent him over. I don't really know. It could just be as simple as he got really angry because he didn't want to do the group activity and had a fit. But I know when he's trying to communicate... I just don't always understand what he's saying. And that's where a huge part of the frustration comes from.
Today I left him at school for just an hour. His teacher said he did much better today but when I picked him up he was more than eager to leave. I guess it was just the right amount of time. So we're going to do that again tomorrow. And hopefully on Monday we can extend his stay.
So even though we had our IEP done before the school year was over this past Spring, somewhere along the line somebody (or bodies) screwed up. Andrew did not get into preschool, and I was told by one of his PiP workers that he should most definitely be going.
IEP kids get priority - so I don't know what the heck happened. Now I'm scrambling to talk to other preschool teachers and see if there's room anywhere. This really sucks considering it would do him good to socialize and learn structure with other kids. HE NEEDS IT. So anyway, I'm quite frustrated.
I'm also having trouble getting in touch with our coordinator through the Regional Center. It's incredibly frustrating. But I'm trying to get a referral for a Motor Sensory Clinic run by our local university. So who knows how long this will take.
I'm started to get annoyed, to say the least.
Andrew hasn't lined anything up in a long time. So when this happened my husband said, "Grab a picture." And I ask you, what's so interesting about wheels? Nothing to us. But apparently they're quite interesting to a 3 year old.
I don't get it. I see other kids the same age as my little J, and they speak and express themselves so clearly and articulately. I mean, I suppose I understand why, I just don't understand how... I realize that makes no sense unless, well, you understand what I'm talking about. Yes, that makes even better sense!
I just had the most frustrating conversation with Jonesie trying to get him to "listen" to my words and respond appropriately. The seemingly simplest questions or directions just don't sink in sometimes, he just doesn't get it. And I think that's what is so confusing because sometimes he blows us away with some astounding statement or level of understanding about something, and my husband and I just look at each other going, "Where did that come from?"
But I seriously fear for his safety sometimes, and being taken advantage of by,especially, adults. Sick ones. And after explaining over and over the meanings of things/concepts like "tomorrow", "tonight", "last night" (as an example), or we struggle though conversations where he can't even tell me what he did that day... I just wonder when he'll understand. Sometimes I think this has to be common for a 6 yr old, but then as I said, I hear his peers and realize he's just got a big challenge on his hands.
I wish I knew more. I feel so unqualified sometimes to be raising kids on the spectrum, because I want to know everything that could help them. I suppose I'm not the only one who feels that way.
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Earlier in the week my little guy burned himself pretty badly by putting his chin right on the edge of a very hot pizza pan while, of all things, we were waiting for it to cool. At the time he did cry, which prompted my husband to rush him to the bathroom and see about treating it: Neosporin was about the only thing he let us put on it. But a few minutes later everything was "fine". No more crying, no fussing... he just sat down, ate his pizza, played like normal, went to bed without seeming to be in distress.
We thought maybe the burn wasn't as bad as we originally feared. Needless to say this wasn't the case. I did end up take him to the doctor to make sure were caring for it properly, and since he was picking at it pretty good and making it bleed (this had to hurt!), and she informed me that it was a second degree burn. Now, I've had burns before - not necessarily second degree, which is why this is so disturbing to me because I would not have been able to function with this type of injury. The throbbing and radiating pain that comes with a bad burn - how he was able to just "move on" baffles me. Yes, I understand the way sensory perception is affected in kids who have autism, but that doesn't make it any less mysterious.
I didn't want to post anything negative here, but sometimes it's helpful to express the emotions that are causing me to be so negative. Plus, maybe someone out there can offer some insight.
Andrew's early intervention came to an end last month and it sort of feels like he's hit a plateau. He attends a playgroup two times a week where they have the kids socializing with each other, and learning about turn-taking, group activities, etc. He loves and it, and I'm so pleased he does so well. But today I just felt really distraught.
He had a bit of a meltdown this afternoon that I think might have been aggravated by my own frustration. He refused to eat dinner, yet wanted to be in the baby's high-chair. So I removed him. In anger, he toppled over the plate of food and the meltdown began. I didn't yell or scold him, I just picked him up and muscled him into bed. He yelled, screamed, cried... I just kept him there, tried to talk to him, and waited for him to calm down.
I asked him simple questions: Are you mad? Are you hungry? Are you sleepy?... he tried to say something but I just couldn't understand him. Then when I finally think I know what he's trying to say I repeat it, only to have him get angry and yell NO. This often happens where he will clearly say a word - like milk, for example - and I will oblige him, only to have him explode in a rage or meltdown because I obviously didn't do what he wanted. It's so confusing and frustration because... what can I do? I want to help him talk, express more clearly, understand what I'm asking him.
This is hard for me. What do we do?
Today was just emotional for me. For whatever reason, I was really affected by all this. I guess it's a mom-thing. What mom (or dad) wants their kid to have a hard time for no fucking reason. This is when I start to go through my Autism Sucks state of mind. I HATE it. I try to be positive about it, but sometimes I just have to go through that anger, I guess.
On the flip side, we have a friend who's son is also autistic. Lately she's been having some wonderful breakthroughs and will post little updates on her Facebook, followed with an "autism is beautiful" conclusion. I totally know what she's talking about, but sometimes I just think it's the pits.
Finally organized through my personal home videos... Better late than never, I always say. =) Original post here.
My audio files will be unavailable for the next few days. Just having a bit of trouble with the host website. It should all be back to normal in a couple days. Thanks for hanging in there with me!
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Today Andrew's interventionist brought shaving cream to play with. Sometimes children with sensory issues (common in kids with autism) will resist these kinds of activities, scratchy clothes that would ordinarily seem soft and non-distracting to you and I, getting dirt on their hands, swinging from playsets, all sorts of things. So they practice getting used to those things. It's why some children with autism are referred for occupational therapy.
He has since some to enjoy these kinds of activities, although he still gets a little irritated by the shaving cream. It's good to seem him adapting and getting used to things like this.
Andrew just finished his speech therapy session and was admiring his art project. I tried to get him to tell me about it:
All rights reserved by mon_star for autismathome1.blogspot.com So I'm making Andrew some breakfast and set it down on the table and walk out of the room to get something. When I return I'm greated with a , "Hello, how are you?" Normally, he would answer for me or go through a little script of the typical things that I would say and follow it up with a repeat of that. So the whole conversation could be:Andrew: Hello, how are you?Me: I'm fine. How are you?Andrew: I'm fine. How are you?Or it could be:Andrew: Hello, how are you?Andrew: I'm fine. Andrew: I'm fine.They call this echolalia and for some reason autistic children use a lot of it. So they have to be taught little scripts like this to know how to interact and speak with people. So today, after walking back into the kitchen Andrew says, "Hello, how are you?" I answered the usual, "I'm fine, how are you?" And ever so naturally Andrew answered, "I'm fine, thanks." It took me a couple seconds to process what I had just heard, and once it hit me I simply squealed (like, literally squealed), shuffled over to him, grabbed his face and kissed him... And he never even realized what he did.
Here's the link to the story.
http://hosted.ap.org/dynamic/stories/U/US_MED_ASPERGERS_DIAGNOSIS?SITE=WABEL&SECTION=HOME&TEMPLATE=DEFAULT
I'm not totally sure what I think about this. My initial reaction is that this should be a good thing since so many services depend on having a diagnosis of Autistic. My older son with PDD-NOS wouldn't qualify for the same services that my autistic 2-year-old does, and he would benefit just as much from them. So I'm not really sure why it's such a big deal to have "autisic" be just an umbrella term. Then, within that term are all the different categories, of which there are many.
The part of the story that I found to be comical was a statement made a psychiatrist where she explained that the reason people with Asperger's are upset about this new change is because "One of the characteristics of people with Asperger's is that they're very resistant to change." Really? Is that the best answer anybody could come up with? Let's talk about the fact that a psychiatrist deals with mental health issues and chemical imbalances, and autism is a neurodevelopmental problem. Journalism sucks.
Anyway, I'm not totally sure what the big fuss is about as long as it makes receiving services easier for everybody.
So we have an organization up here called the Rowell Family Empowerment Center. They deal in support services, education, and advocacy. I was hoping to get into one of their classes on IEP's and dealing with that whole process, but I was unfortunately unable to make it. But they do have them periodically throughout the year.
Andrew was recently approved to have respite care paid for by the Regional Center. So the Rowell called me to see about sending out paperwork to get that going. Their respite providers are required to be certified in a course pertaining to caregiving and autism. Recently, the Rowell decided to expand that certification course to include many more disabilities other than autism, which I thought was awesome. I asked if it was possible that I be able to attend this course, merely for my own educational benefit, and was told that I was more than welcome. Yay! So Im signed up for a weekend course that will take place in next couple of weeks and need to schedule childcare so that I DON'T MISS IT.
I'm totally looking forward to it and will do an audio update as soon as it's over. I hope to learn some valuable things.
I talk about our experience in discovering that our little guys had autism. The podcast is available for download through the iTunes store or you can CLICK to listen.
Agh! We have finally hit the phase/stage where Andrew is banging his head against walls or floors when he gets frustrated. I've seen instruction for dealing with tantrums and such with neurotypicals but I doubt those methods will work for our situation. From what I've read, and I know each child is different, solutions include helmets, allowing them to get their frustration out in a safe and soft environment, behavioral therapy, allowing them to grow out of it. Well, that really doesn't help me right this instant considering my little guy still has limited speech and a tendency to become 'feral' once he hits that level of frustration. I imagine the helmet and time will be our answer, at least for now. But considering that Andrew can barely keep his clothes on I'm hesitant to seriously consider the helmet. Either way, it's very frustrating and scary to watch a 2-year-old throw his head directly into a wall the same way a ram would fight for a mate. It makes me want to place him in a padded room.
Just a quick update on the latest developments. More to come later. The podcast is available for download through the iTunes store or you can CLICK to listen.
It's time to start potty training little Andrew. The problem is what to do when he can't express his need to go. He can say diaper (or at least what we understand as diaper), he can repeat the words like potty, poop, etc. But I don't think there is a full understanding of what to do with those words yet. However, when I tell him it's time for a diaper change, and as long as he feels like being compliant, he'll get in the proper position so I can change him.
I read a story of a woman who was trying to train her autistic child whom the supposed experts had warned her would never be able to potty train. She said she locked herself and the little boy in the bathroom for most of the day, bringing with her snacks and a huge supply of drinks. Eventually, he got the idea.
It sounds pretty brilliant to me. Unfortunately, not so realistic. For now we're just working on sitting on the toilet, making sure that the 'important parts' are facing the right direction, and then flushing the toilet. He seems to enjoy this even if he doesn't actually go. Like everything, though, my fear is that if I push him too hard he will just plain refuse to even walk in the bathroom.
Just wanted to say a quick hello.
The podcast is available for download through the iTunes store, the little player in the sidebar, or you can just CLICK to listen.