June 26, 2013
Moe gave up his nap. Then, slowly, his nighttime sleep got worse and worse. At first he had trouble falling asleep. We tried behavioral techniques, sensory calming techniques and eventually melatonin. Then he started having trouble staying asleep. Sometimes the melatonin wouldn't work. We would have good cycles and bad, but the last six months or more have been awful. Moe rarely slept through the night, and his awake times would often span several hours. It affects all of us, including four year old Jelly.
We had to get a handle on this, so we found a psychiatrist.
Side note: finding a good psychiatrist is hard to do. Most of the ones I contacted aren't taking new patients or have waiting lists of several months, some up to 8-10 months. Many do not take insurance. Still, time and persistence and perhaps a bit of luck paid off.
Over the past two weeks, we had several appointments with the psychiatrist. At the last one, she recommended some medication. I am thankful we have options, and yet we do not rush into meds lightly. Moe cannot tell us how he is feeling. He already has trouble learning new skills. We want to make sure his mind is still sharp and that he is able to learn.
Our primary goal was to tackle sleep. After that, we wanted to address some emotional dysregulation, impulsivity, some aggression, as well as hyperactive behavior. It is our belief that most of these come from being over tired and over stimulated, but we can't get a baseline on those behaviors until he's sleeping well. We do not believe Moe has ADHD.
So we discussed options, and have decided to go with a medication that will help with sleep, and should also help address some of the above, as well as anxiety. I'm not sure yet if I feel comfortable talking about Moe's specific medications on this blog, so I'm going to hold off on that for now. (If anyone has specific questions, feel free to contact me here or via my Facebook page).
Last night was the first night, and we will slowly ramp up the dose over the next week if he tolerates the medication. We were worried about getting him to swallow a pill, but it is very small and he swallows it down with a spoonful of pudding. I hope that will continue.
It took two hours for Moe to fall asleep last night, but he slept through. It wasn't a great day for him today. It is hard to know if that is because of the meds or if he just had a bad day.
Tonight, he fell asleep at a decent time as well. I will be tracking everything, from asleep and awake times to overall mood.
May 28, 2013
Friday night was one of the worst nights of my life. It wasn't the worst; I was with my brother the night he died. No one was injured (much). No marriages were ended or houses destroyed. But it was a night I hoped would never repeat itself, but has, to some degree, every night since.
I wrote a post about what happened, a play by play of the seven hours that Moe spent screaming. I decided that maybe such detail was better left for a private journal entry. Toward the end of the piece, however, I wrote this:
And this is where I will say what I try to avoid saying. Sometimes, autism sucks. I know that is hard to hear, and I am not trying to offend anyone. But it is our truth right now, and I dare say Moe might agree with me. For some, autism may bring great gifts alongside the challenges. But not here, not today.I've spent the last few days trying to decide if I would post that statement. On the one hand, I know that many are offended when someone says "autism sucks." On the other hand, it was exactly how I felt.
Autism isn't just a disability. It is the very lens through which autistic people view the world. It is, to put it most simply, their brain. There is no Moe with autism and Moe without autism, so if I say "autism sucks," I am really saying "Moe's brain sucks," ergo Moe sucks. And how could I, as Moe's mom, the person who loves and cherishes him more than any other person in the world, think that, let alone say it out loud?
The flip side of that, however, is that autism is, for Moe, quite debilitating. After all, what is autism if not a disorder? We parents are often criticized for focusing only on the challenges of autism, and not the gifts. But without the disability, what is autism? In other words, if someone had all the "gifts" of autism (say, for example, Temple Grandin's astounding visual thinking skills), but none of the deficits, would she still be autistic? Can you ever separate the person and the disorder? Different people will have different answers to that question.
Moe's autism makes him unable to sleep. It makes him aggressive. It makes him unable to speak or clearly express his wishes, causing immense frustration. I can only guess that if Moe were able to make all of those challenges go away, he would. If behavior is communication, what does his scratching and biting say, if not "this sucks?"
But I cannot say what Moe thinks. I can only say what I think. And I think autism is really, really hard on our family. On days like today, when I've slept only three hours, I love Moe but I do not love autism. The idea that I cannot hold those two opposing views in my mind at the same time is someone else's construct. Not only can I make that distinction, but I do it every single day. I have to.
|Scratches from earlier today|
It is autism that makes him unable to sleep or speak, or use the bathroom, or play with his sister, or go to school. It is autism that makes it so that he can't say "Mommy, I love you."
I have to believe that he would if he could.
Because that is how I keep doing what I'm doing. That is how I get up every morning no matter how little sleep I've gotten and give Moe a hug and a kiss and get to work helping him be everything he can be. That is how I keep moving forward, fighting every single day for more for him, for more than just "appropriate." That is how I live in a house you wouldn't believe, with locks on every door, unable to even have curtains because Moe has pulled them down. To live in constant fear for his safety, now and forever.
If I am going to be able to love Moe and fight for him, I need to be able to, once in a while, shout to the universe that "autism sucks!" and not be filled with guilt that it must mean I don't love my child. Because I do. Some days, that love is the only thing that keeps me going.
|My beautiful boy|
I am moderating comments, so yours will appear after approval. As always, respectful disagreement is welcome.
January 16, 2013
Then things began to fall apart. Starting right before the new year, Moes started waking a lot during the night. He stopped trying to talk (though he is still pointing and nodding). And then some of the aggression returned, the kind of keep coming at you, scratching and hair pulling, we hadn't seen in months.
Just long enough for me to believe it was gone for good.
This is when it gets hard. When it starts to feel like all our hard work, both mine and his, has gone out the window. When I question everything, when I wonder if it is time to double down on what we're doing or throw in the towel and start over.
The hardest thing is not knowing why. Certainly the sleep and behaviors are linked, but what is the root cause? Is this just a temporary setback because Moe isn't feeling well? Is he not sleeping because he's processing all he's learning and beginning to understand? Are his behaviors a result of increased frustration at having more to say and being unable to say it? Or is this a real regression?
The weekend was tough. I dreaded Monday. I absolutely hate taking Moe to speech therapy when he's so aggressive. When he's misbehaving during ABA, I feel like that is what they are, at least in part, there to work on. They are behavioral interventionists. But during speech, I just feel bad. (Our SLP has an ABA background so she in unfazed. This is all me.)
But Monday's speech session was one of his best. He really participated. He had no negative behaviors. The rest of the week has been good so far. A little bit of hair pulling and scratching, but much less frequent. And he's working hard again.
So what does it all mean? I have no way to know. Maybe he's just testing us, seeing what he can get away with, like any five year old might. All we can do is go back to the techniques that have worked in the past, continue to help Moe learn to communicate and move forward.
February 24, 2012
Tuesday was a tough day. We've had some concerns about Moe's progress, and are having a thorough assessment done by a very nice and well-respected child psychologist. Last week, we had the parent interview and she observed Moe in his classroom, and this week I took him for the formal part of the assessment in her office.
I'm sure many of you are familiar with the ADOS and other similar structured assessment tools. Moe does not do well on these. He can do things like puzzles and matching, but he doesn't always understand what is being asked of him, and is not very compliant. He's also got an attention span of about 30 seconds these days (something which has gradually decreased since he was 2, and could play with a single toy for 45 minutes). Moe is also not easy to motivate with rewards or "reinforcers" for those of you up on the ABA lingo. Moe is perfectly happy to be there, but you know you're in trouble when the psychologist said "at least he's interested in his environment."
I did manage not to cry before, during or after. Progress!
I took Moe for a haircut yesterday, which took some time in the morning. We picked Jelly up from school (apparently Jewish schools don't respect the presidents quite as much as the public schools) and things were going smoothly. But later in the day, Moe had a serious meltdown at home. I think he was hungry, but refused everything I gave him to eat. I tried giving him a bath, hoping some sensory input would do the trick, but apparently that was the wrong kind. After drying both of us off, he calmed down a little while later.
Moe has been falling asleep progressively later and later this week, and didn't finally fall asleep until almost 10 last night. He was up at 3 in the morning for less than an hour, but it was a tough hour. He screamed in what sounded like pain; he's hoarse this morning. Being overtired is really rough for him, and I think in some ways, is actually painful. He slept until almost 10 this morning. I didn't have the heart to wake him for the sake of "schedule."
I'll have to make sure Moe gets enough activity today but I'm home with both kids. The weather is beautiful so I suspect we'll be spending the day outside. We really need a climbing structure out there!
January 29, 2012
Generally, I wouldn't be too concerned about this but it has caused a pretty serious problem at night. As Moe is going to sleep, he will (even through his pajamas, which are one piece and zip up the back), try to put his hands down the top of his diaper. This then folds the top of the diaper down. Then, somewhere between midnight and 2 am, Moe pees. The diaper, in its folded and crumpled state, does not contain the urine, and Moe gets soaked and uncomfortable.
For the last two weeks, this has happened almost every night. Moe cries. I change him. We fall back asleep, usually fairly quickly. Sometimes in the morning this happens again. Some nights, he's going through three pairs of pajamas, and three diapers.
Obviously, this is problematic. Moe and I are both on a pretty serious sleep deficit. Jelly sometimes wakes up as well. And let's not dwell on the affect this is having on the environment with all the extra laundry and diapers.
We are seeking solutions. I tried giving Moe melatonin, thinking that if he fell asleep quickly, he would not have as much time to mess up the diaper. This actually worked, but, as generally happens with melatonin, he woke up on his own in the middle of the night but instead of falling asleep after a quick diaper change, he was up for hours.
Jeff has tried to engineer the problem. First, we put some regular underpants over the diaper, thinking an extra layer might help. It didn't. Next, Jeff put some stiff tape on the top of the diaper to keep the top from folding over. Instead, Moe was able to use the top of the diaper as a kind of handle and ended up just moving the whole diaper around. It leaked.
Last night, we started by putting painter's tape on the diaper, covering the diaper fasteners as well. We figured it would help but not be hard to change in the middle of the night if necessary. This failed within minutes.
Jeff followed this up with masking tape.
I can't comment yet on the success of this. Last night was a nightmare, as Moe had a pretty serious meltdown, from about 7-9. He was exhausted, but unable to fall asleep. He was in full sensory seeking mode, and we tried every calming technique we knew. Some would work for a bit, but as soon as we even mentioned going back to bed, he'd scream again (hooray for receptive language?!). We broke down and attempted to give him melatonin, but by then he refused to chew the tablets.
We had some of the liquid stuff, so after a quick dosage calculation (if 10ml is 2.5mg, how many ml would be 500mcg?), we got him to drink the stuff. I'm not sure it even mattered at that point, as he was already starting to slow down. We stopped hearing from him some time after 9:30.
The good thing is both kids slept in until about 8:45 this morning. Moe's diaper had a little leak, but Jeff insists this was not a failure of design, just length of wear. Further testing needs to be done.
January 1, 2012
On Tuesday, life returns to what passes for normal around here. School will start. I will wake up on time, pack lunches, get kids dressed and fed and out the door.
I cannot wait.
This has been a difficult break for us, probably the hardest one yet. Moe's aggressive behaviors increased throughout the break, reaching a peak on December 26-27. For those two days, it seemed every interaction we had with Moe involved him grabbing or pulling us. He went after the dog repeatedly. We would grab his hands and sharply tell him "no!" but often he would just continue to come at us, over and over. One time he just ran up to me from behind and pushed me. He grabbed Jelly when they were riding in the double stroller.
We couldn't figure out why, only that it was constant. Was he sick? Just bored or missing the routine of school? Were these outbursts sensory in nature? Moe wasn't sleeping well, but we couldn't tell if that was the cause or another symptom.
Things have gotten a little better over the past few days, and we learned that a softer response tends to extinguish the behavior faster.
Jeff also installed Moe's Hanukkah present, a hammock chair/swing that Moe took to immediately, and has been a perfect respite when things are overwhelming, relaxing spot to hang out with a book, and excellent sensory replacement for banging the rocking chair repeatedly against the wall. The installation was a big project, involving things like joists and eye hooks and, in what may seem like a non-sequitur but was actually crucial to the process, walking through setting up WiFi at my in-laws' house.
We also feel pretty strongly that this aggressive behavior is not just sensory in nature like we originally believed, and was so often the case with Moe in the past. There is still an aspect of that, as when he's overly excited, and wants to calm down. But there definitely seems to be an attention seeking component as well, as if he's telling us "Hey! I'm excited!" or "I'm bored" or even "feed me." He's figured out that this "bad" behavior gets a response, even if it is a negative one (which to him, may not seem negative at all). If this is the case, it would be a very good thing.
Back in August, when I wrote about Moe pulling hair at school, his old teacher, told me "aggression is interaction."
I'm starting to believe her.
July 24, 2011
The whole week has been like this, at one moment stressful and difficult, the next full of joy and connection. Moe has been trying hard to communicate with me, leading me places by hand (a behavior the speech consultant suggested we encourage) and even approximating some words: "hu" for hungry, and "wawawa" for what I think was an attempt at water. These attempts to communicate comes with frustration as well, as Moe struggles to tell me what he wants, but is unable to find the right way to tell me. Or, on occasion, I push him to try a bit harder or I just can't give him what he wants at that time.
We've had some success with Moe on the potty as well. He's been taking his diaper off over and over again. I think it is almost always just after he's gone. Friday afternoon, I put Moe in his pajamas (the ones with the back zipper that he can't take off) because I was getting so frustrated. But I am hopeful that this is an early sign of potty-readiness, and I've started putting him on the potty in the evenings before bed. He's gone enough times that I think he knows what you do there, though the understanding that you go there every time, and the ability to communicate that he needs to go (before it happens), are likely a long way off. Still, I'm encouraged.
Moe had a lot going on this week. He started a new school and got some vaccinations at his four year old well-check doctor's appointment on Friday. I have to imagine he has a lot to process and hope that his sleep will even out soon. When Moe is sleeping well, the rest usually follows.
There were some great moments this weekend, and it seems right to wrap up with those. Jeff and Jelly were both napping on Saturday afternoon so Moe and I had some time to ourselves. He started running up and down the hall, so I positioned myself at one end. When Moe ran toward me, I held my arms out and he reached right up to me (not something he would normally do). It was so cute. I spun him around and he loved it. He ran back down the hall and back to me again and again, until I just couldn't lift him anymore.
Saturday night, Jeff had brought home some Yogurtland goodness. It was around 9:30 and Moe was having a really hard time falling asleep. I could see him on the monitor, tossing and turning. We dimmed the lights and brought him to the living room. He sat next to me on the couch, and I offered him some frozen yogurt. He wouldn't take it at first, but after testing the frozen yogurt with his fingers (for some reason he doesn't trust me enough to just take anything I hand him on a spoon), decided that it was awesome. So he snuggled up to me and we shared the rest of the yogurt. He was mellow and sweet, and it was a really nice moment. After the yogurt was done, we put Moe back to bed and he fell asleep pretty quickly.
I get really frustrated when Moe can't fall asleep, but we've all had the occasional sleepless nights. When that happens to me, it often helps to get out of bed for a little bit. With Moe especially, I'm always analyzing and solving. Sometimes, it's hard for me to remember that my kids are human too, and may just need what any of us might need: a snuggle, a snack, or a change of scenery.
April 30, 2011
Jeff was at a class on Thursday night. I got the kids in bed, ate some dinner and planned to spend the rest of the evening assembling the dollhouse we got for Jelly's birthday. Around 8:30 or so, I noticed Moe was still awake. This was not surprising, and usually I go in, change him if necessary, tuck him in, and he falls asleep in a few minutes.
This time, I went in to find Moe completely naked, a poop-filled diaper off and the obvious mess that would follow the removal of said diaper. Needless to say, getting Moe cleaned and changed, then changing the sheets, pillows and blankets while trying to keep him from running around the house was a royal pain in the ass.
This was not the first time Moe has taken off his diaper in his crib, but it was the first time in the one piece pajamas, and is becoming a bit of a trend. Thankfully, he isn't always dirty. The boy just likes to be naked, I guess.
By the time I got Moe back down, then rocked Jelly who was still awake with all the commotion, it was almost 9:30 and I didn't want to start putting together a dollhouse. After assembling our play kitchen, I know these things can take hours. But I also felt awful that Jelly wouldn't wake up on her birthday with her present all put together.
Jeff got home, both kids were asleep and the house was quiet (of course). But he saved the day and put the dollhouse together. Jelly woke up to find her birthday present waiting for her, and it's awesome.
April 18, 2011
The first thing we did was to try take a break from the melatonin. The first day, we put down Moe down at his usual 7:00 bedtime. He didn't fall asleep, so at 8:30, we gave him the melatonin. He fell asleep within 15 minutes, and he didn't wake up until morning. We did this for the next few days.
Last week was spring break, so we decided to wait it out a little longer. We put him down at 7, skipped melatonin, and he still fell asleep around 8:30. And he didn't wake up until morning. Interesting, right?
We wondered if it was time to push Moe's bedtime back. We had thought about this but any time we tried it in the past, he woke up tired. Now I think Moe wasn't tired because he went to bed too late, but because he was awake part of the night. The melatonin was putting Moe to sleep artificially early, so he was waking up. Aha!
It's been over a week and Moe has been off the melatonin and consistently falling asleep on his own. Some days are easier than others, and he has woken up a couple nights for a brief time. But it's better
So here is what we learned:
- Moe can fall asleep on his own.
- Moe doesn't need as much sleep as we thought.
- Inconsistent sleepers are consistently inconsistent, so this will likely change again.
Hoping for the best, and enjoying some uninterrupted sleep, at least for now.
March 30, 2011
Moe also hasn't been eating well. We're not sure if he's not sleeping well because he's hungry, or if he's too tired to eat. Either way, it is a vicious cycle, and although hunger doesn't explain every night, it may be largely to blame for this bout of insomnia. On Thursday, he woke up at 4:30 in the morning and sat down at the kitchen table for a snack. We gave him one and he went back to bed.
I've started a sleep and food log to try to narrow things down. In setting this up, I also realized that I had started Moe on a new vitamin. He's taken a multi-vitamin for a while, but I ran out of the fancy orange ones I usually get him and bought the gummy bears at Costco. It's possible this new vitamin upset his stomach. I hope not because I have a Cotco-sized vat of them, but for now we're taking them out of the equation.
We've also started doing everything we can to make sure Moe goes to bed on a full stomach. This doesn't necessarily mean he has the healthiest diet right. The other day, the kids got to split an Oreo cookie milkshake. At first, Moe would not even touch it. But after seeing Jelly bathing in hers, he got up the courage to put his fingers in it, then finally taste it. Once that happened, he realized the error of his ways and devoured the rest. He even used his spoon, something we've had trouble getting him to do recently.
Meanwhile, she was meticulously picking the hard icing and while swirl off the top, eating that part first, just like I used to do.
|Notice the dog in the background|
waiting for dropped crumbs.
March 26, 2011
I guess it started when we changed the clocks. I didn't think it would be that big an issue, since we give Moe melatonin to fall asleep. But for some reason, both kids started waking up really early. Then Jelly started teething and Moe got a cold and it went downhill from there.
The last week or so, Moe has been waking up several times in the night crying. Sometimes we would find him tangled amid the blankets and he just needed to be tucked back in. We'd do a quick fix and he'd be quiet for a while. Lather, rinse, repeat repeat repeat.
Other times he was comfortably under the covers, head on pillow, going from crying to screaming and back again. We've tried soothing, not soothing, offering water or milk, taking him to our bed or the couch, turning on lights, keeping them off. We're dumbfounded. And did I mention exhausted?
But I've been sending Moe to school anyway, because he doesn't seem sick anymore, and if he missed a day everytime he didn't sleep, he'd never go. And he's had a decent week; on Wednesday his teachers said he even used some words to request things. (He said "frog!" for the 5 Green and Speckled Frogs song!) On Thursday, he was in a good mood in the morning, but when I went to pick him up, in the pouring rain, they had to carry him out to me. He was screaming, covered in tears. They said he had been like that for about half the day.
So I finally installed the video monitor I've had sitting on my desk for a couple months. And by "install," I really mean "plug in." Not sure why I didn't do this sooner. And we watched. Moe fell asleep as usual, and though he stirred a little around 10:00, he didn't wake. I set the monitor on my nightstand. I liked having that visual of Moe as I fell asleep, though I'm so glad I didn't have one when he was a baby. As Jeff pointed out I would have been asking him every 5 minutes if he thought he could see the baby breathing.
Around 12:30, Moe woke up. He didn't cry, but his eyes were open. It looked like he was starting right at me, though I think he may actually have been looking at, and possibly calmed by, the little power light on the camera. Moe was quiet, barely moving except to shift from one side to the other. But he was awake until around 5:00 am. I decided to let him take the day off from school so he could sleep in. He didn't get up until after 9:30.
So now I'm freaking out even more. All those nights when he was quiet and I thought he was sleeping through the night? Maybe he wasn't. The problem might be much worse than I thought.
And it gets worse. I tried to make an appointment with our developmental pediatrician, Dr. S, and found out she is not taking any new appointments for SEVERAL MONTHS. Our regular pediatrician told us Dr. S is going on maternity leave. The last time we saw her she was just back from having a baby. Wasn't that one good enough for her? Jeez.
She's supposed to be around for 2-3 more weeks so we're hoping we can get an appointment with some secret code word or something. That actually happened with her once before.
So here we are, exhausted, grumpy and without a plan. Autism parents, I need you. All suggestions welcome.
Special thanks to @jentroester who has been so supportive on Twitter already.
January 29, 2011
I made the mistake of not putting her shoes away last night, and when Jelly sees shoes, she must wear them. NOW! I attempted to show her that they wouldn't fit over her pajama feet, but she wasn't happy about it. She let it go when I told her breakfast was coming.
Once I got Jelly to the table, I started to make some coffee. I decided to experiment with my Tassimo Brewbot, by using the cappuccino foam, but regular coffee, rather than espresso. You don't have to tell me that I like to live dangerously. My advice: only attempt this if you have a very large mug, which I do. Just as my brewbot was finishing creating the frothy goodness, I heard Moe. Usually, if we don't have to rush to get ready for school, I just go in, open the crib tent, and let Moe climb out when he's ready.
This morning I went in to find him laying down, snuggling in his blankets, half naked. Diaper and pants off. I can only imagine that this was the fun I heard in the wee hours (pun intended). Fortunately, there were no "gifts" to discover, but there was a wet diaper wadded in the corner of the crib. Moe was not too happy about being wrestled out of his crib, and changed so quickly after waking up, but it had to be done.
After I got him cleaned up, I sat with him on the floor and comforted him a bit. At one point, Jelly came over and patted Moe on the back. How sweet is that girl? Of course, it only annoyed Moe.
Jeff is now at the gym, the kids are watching Sesame Street and I'm finally enjoying my cup of cold, milky coffee. Is it naptime yet?
|My little troublemakers|
January 3, 2011
But I knew to add a caveat. I know my kid. "We still have one more night to go," I said. Things can never be that easy, and sure enough,around 11:15 (approximately one second after I had fallen asleep) we heard Moe moving around in his crib. Not long after, he was crying, screaming at the top of his lungs.
His beloved Monkey has been missing for days, but I had a backup. Backup Monkey is actually Monkey #1, that I had retired because it was too beat up, chewed to pieces. But Monkey #2, current Monkey, has probably surpassed #1, so I retrieved first Monkey from my dresser drawer, where I was saving him to put away in Moe's keepsake box. Moe screamed when I entered his room, the light from the hall bothering his eyes. He took monkey, but continued screaming.
15 minutes later he rejected the cup of water I brought him.
After about 40 minutes, near midnight now, I remembered that although Moe had eaten plenty at dinner, he hadn't touched his milk. Jeff brought him a cup of milk. The house got quiet and Moe drank his milk. After a few minutes, he got up from Jeff's lap, climbed back into bed and settled down. I can't help but think how different things would be if Moe could just say "milk!"
I wish I could say that was the end of it. Unfortunately, Jelly woke up and was awake for hours. Ever try reasoning with a 1 1/2 year old at 2 am about how she has to be quiet so she won't wake her brother? We did. Then Moe was up again, though quietly this time, and once again at 6:15. At 7, when I went to get him up for school, he was sound asleep. Of course.
Strangely, he didn't protest too much when I got him up. He ate some breakfast. When I told him again "school today!" he looked at me with wide eyes and huge smile, as if to say "really, Mom?" He was all giggles getting into the car. I don't know why Moe woke up last night. I think he wakes up every night but most nights falls back asleep on his own. Maybe he really was just hungry. But could it have been that he was excited about school today?
I know I am.
October 22, 2010
Moe has been having some trouble with regulation. This means that he'll go from being really mellow one minute to running, climbing, and screeching the next. This may sound like your average 3 year old, but it is more extreme than that, and, when he gets really keyed up, he can't easily calm down and needs external help. The great thing is that Moe is often able to recognize when he needs to calm down and will independently go to his room, close his door and climb into his crib, his comfort place. Or he might rock on his tummy on the rocking chair or exercise ball. But during the times when he's really up, he can be quite a handful, climbing walls, splashing in whatever water he can find (including the dog dish and the water that comes out of the refrigerator). It may look like he's having fun, but being so over-stimulated can be quite uncomfortable for Moe, and hard for me to deal with.
We've been working with an occupational therapist who is helping us create a good sesory diet for Moe, especially on the weekends when he lacks the structure of the school day. A sensory diet just means that Moe gets a good range of sensory input throughout the day, to make sure all his system's needs are met. It also means we have to find the right type of activities for different parts of the day. The first step is to figure out the right "up-regulating" and "down-regulating" activies for Moe. For example, a warm bath is usually a nice, calming activity for kids. Not here. Water is very stimulating for Moe. He seeks out this type of input, but we don't want such an exciting activity before bed. So I've started giving Moe his bath when he gets home from school. This is the crux of our new plan: make sure we do stimulating activities in early the afternoon, and calming activities after dinner. Sounds obvious, no? But it is actually quite challenging to make sure Moe is getting what he needs, especially since we aren't always sure what that is. And there is a 17 month old hanging around with her own agenda.
Some of the aspects of Moe's sensory diet include:
- water and other sensory play, like shaving cream or sand
- variety of snack textures, including chewy and crunchy, and strong flavors like salt or lemon
- heavy work, including jumping, pushing heavy things, climbing
- swinging, rocking, bouncing
- brushing techniques, deep pressure, joint compresions, "active" sitting (sitting on an uneven surface, like a ball or wedge)
Another way to think about this is that Moe may have trouble calming his mind at night. He has a lot of input to during the day that he needs to process. Older children with autism have said that they feel like their minds are very busy, and they can't shut them off. I know I've felt that way if I've had caffeine too late in the day or am worried about something. One suggestion I really like is to try using music as a calmer. We've started doing music time before bed, and are looking for a kid's mp3 player that Moe can control himself. The idea is to load some calming music on the player and if Moe needs to settle down in the night, he can turn it on. We're also experimenting with some guided meditation for children. These are calming audio stories that help kids relax. These can be really useful for older kids who have trouble shutting down at night. I don't expect Moe to understand the stories now, but I do think the relaxing cadence could be calming for him.
As you can tell, it is a time of putting in the work and trying lots of things. I wish someone could just give me a plan and say "do this." But it doesn't work that way, so we're experimenting. Some days will be better than others, but hopefully we'll hit on the right combination of up and down, high and low, salty and sweet.
October 7, 2010
On top of that, Jelly has been sick with a fever, runny nose, the works. And she only wants mommy. When Jeff even tries to go near her, she screams "no!" (her new favorite word) and clings harder to me. It was cute once.... Once.
Despite all of that, Moe had an interesting day at school yesterday. When I picked him up, his teacher, the Magnificent Mrs M, came running over to me to tell me how talkative Moe was! She put a list in his daily communication book of everything he said that day: stamp, morning, four, please, open please, more, more pear, and mad.
These were pretty interesting to me for a few reasons.
- "Morning" was in response to Mrs M saying "Good morning, Moe." Socially appropriate!
- "Open please" and "More pear" are two word phrases. Haven't heard those before!
- He said "mad" when he was tired of the aide, Super K, working with him at snack. He expressed an emotion! (I haven't mentioned Super K before, but she's great and I'm sure I'll be mentioning her again.)
Of course, I'm so proud, but I'm also trying to figure out what made that day so great and how I can recreate it. The rest of the day, Moe continued to be happy and well regulated, though less chatty than he was at school. The only thing I know is that this fabulous day came after Moe had a full night's sleep, which is something I seem to have very little control over. I don't think this is a coincidence.
It has been a tough week, but this note was just what I needed to make it through the rest of the week. A little progress goes a long way.
October 4, 2010
This time is a little different from last time. He used to wake up giddy, giggling and jumping. He was a little manic, but didn't seem unhappy. These past few times Moe has been screaming. He's inconsolable, crying and pushing us away. It is painful to watch, but there seems to be very little we can do to help him in this state. A couple times, we've brought him to the living room to try to settle him down and as soon as we're not holding him, he runs as fast as he can back to his crib. I've started to wonder if he's having night terrors. Whatever the case, he's clearly exhausted and quite upset that he can't get back to sleep. The whole thing usually lasts about an hour before he's calm enough to fall back asleep.
Last night was especially bad because Jelly has been sick with a cold and waking up more easily. So when Moe finally settled down, Jelly woke up. And when she got back down, Moe was up again, this time back to his old laughing and jumping tricks. After the chaos died down, I sat down on the couch and had a little bit of a meltdown myself. I try not to let myself indulge in too much self-pity, especially when sleep-deprived, but last night was really hard. These night wakings, on top of the regulation issues Moe has started having both at home and at school, like needing to chew all the time, rocking on the rocking chair, and spinning in circles around the rug, are starting to get me pretty freaked out.
At one point last night, Jeff had Moe in his lap and we were trying to calm him with some deep pressure. Moe was kicking and squirming so hard that he head-butted me. I thought he busted my lip (he didn't). And that is when I started to wonder: If this is what Moe can be like when he's three, what happens when he's 5? Or 7, or 13? I try really hard not to "go there" and I didn't say anything to Jeff at the time, because it bothers him when I travel down that path. Things could be much, much better by then, or they could be worse. Nobody knows.
In the meantime, I've started looking into getting some additional in-home behavior and occupational therapy for Moe and to help me create some more structure and predictability at home.
If you're local to the San Jose area and have a great behaviorist, I'd love a referral! Feel free to contact me at wantapeanutblog[at]gmail[dot com], or DM me on Twitter @wantapeanut
August 9, 2010
It seems some of the more devious gods were working together. I’ve mentioned a couple of times that I read a blog called Both Hands and a Flashlight and that you should too. The writers, both parents of a child with autism, are fabulous and they often say exactly what I’m feeling, only better. When I first started, they wrote me a personal email with words of support I continue to refer to over a year later. But I digress.
A week or so ago, they wrote a post called, Climbing Out. But I hadn’t read it until yesterday. I even left a comment. My exact comment, dated Sunday August 5 at 3:03pm, reads:
Moe has been getting up a lot at night with such manic energy. He can climb out of his crib, but doesn’t, and I dread the day he decides it’s time. I don’t want to see that manic energy running all over the house at 2 am. No words of advice – just hoping to learn from you on this one.
The answer, we hope, is a crib tent. Unfortunately, no one sells them locally – not even Babies R Us - so I had to order one. It will arrive tomorrow.
August 6, 2010
I’m writing this post on borrowed time, in brief moments while Jelly naps and Moe occupies himself (read: stims) on various toys with lights, sounds and spinning pieces. These toys which I, in an attempt to encourage imaginative play, allowed to run out of batteries and be silent until today, are saving what little of my sanity I have left.
Yesterday, Moe had a morning appointment up at Stanford Child Psychiatry. We’re trying to get him into a research study up there and he had a language assessment. I couldn’t handle watching him at another assessment, so Jeff took him. Although these assessments are always stressful for Moe, Jeff said it wasn’t too bad. It was shorter than a regular day at school, so it shouldn’t have affected his schedule.
That afternoon, I put him down for a “nap.” Moe doesn’t actually sleep during nap time. He hasn’t since around his second birthday, but he likes hanging out in his crib and I like the break time. But yesterday, he napped for 3 1/2 hours, until almost 5:00 pm. Normally, I wouldn’t let him sleep that long, but the babysitter was here. Moe was also a little stuffed up and I suspected a cold. In the past, naps haven’t really affected his ability to fall asleep at night, but right now all bets are off. A half hour before bed time, he took his melatonin as usual and we put him down at his usual 7:00 bedtime.
7:30 rolls around, then 8, and he’s still making noise. Around 9, I checked his diaper. Clean, I tucked him back in. He was quiet for a while, then started jumping and squealing. Brought him into my bed and snuggled for a while. When he was calm and yawning, I put him back down, and he was once again quiet for a while, then not. Rinse and repeat three times or was it four? At some point, we gave him more melatonin, which did nothing. Around 1 or 2 am Jeff brought him to the living room and closed our bedroom door. Moe finally fell asleep at – wait for it - THREE O’CLOCK IN THE MORNING.
Thank god I had already decided not to send him to school today. I am also thankful that it is Friday, that Jelly didn’t wake up during the night, and that someone invented coffee, Diet Coke and chocolate covered pretzels. I am less thankful that the dog won’t stop barking, that I have not had a shower in what
smells feels like days, and that I cannot put Moe in his crib today for fear that he might actually fall asleep.
I wish I were at BlogHer10. Mostly for the hotel room.
July 5, 2010
I try to keep my blog posts positive. They are more interesting that way, more therapeutic. They reinvigorate my spirit. But then there are those days. Days when we haven’t slept, and Moe can’t seem to control himself. When talking to him is worse than talking to a wall. When he climbs into his seat at the table, asking for food, but pushes everything away or screams and cries when you take too long. There are days when all I can think about is how many hours it is until bed time, and then, how awful that I feel that way about spending time with my own child.
Moe is challenging these days. His sleep problems have returned and seem to really be affecting his ability to control his emotions. He gets so frustrated that he bites down on his fingers. He can’t seem to communicate even what he’d previously mastered. Can’t (or won’t) ask for more. Can’t sign “I want.” I don’t know how to help him, so I grasp at the little knowledge that I have, giving him the sensory input I think he needs, swinging, wrapped in a blanket, brushing. Sometimes I think he’s bored so I try to engage him in an activity like coloring or reading or water play. I never seem to guess right, to find the one thing that he needs at that moment. I don’t think he knows either, even if he could tell me.
On these days, I am lost. I feel like I don’t know my own son, like I’m losing him more and more. He’s falling deep into the ocean and I’m holding the rope but I don’t have the strength to pull him back up. I need someone to tell me that soon he’ll resurface, that I’ll get my little boy back. But no one can tell me that. No one knows. It could be next week or next year. I can’t think much beyond that. I thought last year was going to be the hardest one, but now I know: We’re just at the beginning.
May 7, 2010
Sometimes I play the "at least he's not" game. Kids with autism can have so many disparate issues, ranging from the ones people tend to be aware of, like speech delays and sensitivities to light or sound, to less apparent ones like digestive issues. When Moe was first diagnosed, his issues were social and communicative, but we would look across the spectrum and think "at least he's a good eater" or "at least he likes to be touched."
I've discovered that this is a dangerous game to play. For one thing, all kids, including spectrum kids, change so fast. As soon as I thought "at least he's not a hand flapper," he started flapping his hands. At first this really freaked me out, not because of the flapping itself but because I thought it was a sign that things were getting worse. But then the flapping would go away for a while and something new comes in. Sometimes he needs to chew a lot, sometimes he gets really manic and has a hard time settling down. These things come and go and although we employ strategies to manage them at the time, I'm learning not to read anything into any new behavior because it is likely to disappear as quickly as it came. Sometimes they return and sometimes they don't.
But lately we've been having an issue we've had trouble managing behaviorally. Moe has, from the time we did sleep training at four months old, been a good sleeper. He'd fall asleep quickly and stay asleep for a good 12 hours, with only the occasional exceptions for teething or illness. I'd always say "at least we don't have sleep problems." You can guess what happened next. A few months ago, Moe started waking up in the middle of the night. He wasn't upset, but we'd hear him in his crib, laughing. Not a normal laugh, but an out of control hysterical laugh. It was cute, but was interrupting all of our sleep. Sure enough, however, that resolved itself after a week or so. Unfortunately, now Moe is having trouble falling asleep and it hasn't resolved on its own. It's been a month or more.
We do everything you're supposed to do, have a consistent bedtime routine that lasts 20-30 minutes, keeping the lights low and distractions minimal. We tried using deep pressure, brushing techniques and swinging. Moe would calm down for a while, but ten or fifteen minutes later, we'd hear him in his crib kicking, playing, screaming and sometimes crying. He was staying awake until 9:30 at night and then we'd have to wake him in the morning, still exhausted, so he'd be ready and fed before his 8 session. Everyone was miserable.
Last week, we happened to have an appointment with our developmental pediatrician, Dr. S, and we mentioned this concern. She suggested melatonin. I'd read about people using melatonin with autistic kids, but I wasn't sure if it was a legitimate thing to do or another snake oil remedy. Apparently, many kids with ASD do have problems producing the melatonin required to fall asleep at the correct time. So we decided to try it.
And thank goodness we did! It is working like a charm. Trader Joe's sells a small, chewable, 500 mcg (0.5 mg) dose. Moe eats it, then we start the bedtime routine. One half hour later, his eyes get heavy and he falls right asleep. We've been experimenting with a half dose (really a quarter dose, since Dr. S said we could give him 1 mg if we needed to), with mixed success. Our goal is to wean him off it and hopefully his brain will get back on track.
But for now, it's wonderful, and it is making a difference in his days. This week, he's been more engaged, verbal and alert. He's having fewer manic times where he can't calm down and I've even noticed he doesn't need to chew (on his chewie) as much. Of course, yesterday, right when I said "at least we've got this figured out," he woke up at 2:30am. That's life, I guess.