Bedtime with my sensory-seeker

[baltmom]

My son (29 months, no official diagnosis yet but likely something HFAish), is a basically happy and content little guy. However, I’m starting to feel like I’m not supporting his sensory-seeking behaviors around bedtime very well. Would love any suggestions, BTDT, etc.

For the most part his sensory-seeking seems relatively mild. It’s almost all proprioceptive or vestibular. Lots of hard work, heavy lifting, pushing, pulling, and teeth grinding. We seem to have a pretty good routine of accommodating his sensory needs in the daytime just by tuning in and communicating. It helps so much that he’s very verbal; eg, he will say things like, “Mommy, I need to pull something,” and we’ll get out a doll blanket and play tug-o-war.

Bedtime has turned into another story. For several months now, his activity level has always seemed to ramp up as soon as we start our routine, and the last few weeks it’s gotten to feel almost manic. Our routine is: look for the moon :),  brush teeth, brief play in room while I take care of his diapers and clothes, pick out 3 books to read, put on jammies, read books, sing a song, go into crib. (We try to avoid bath at bedtime – that hypes him up more.) Takes about 45-60 minutes. Then he’s awake happily talking to himself for 1-2 hours (almost never needs me in the room).

As soon as we start upstairs, it’s like he goes into overdrive. Running in circles, literally bouncing off walls and floors, laughing hysterically, kicking, pushing, throwing. Teeth-grinding like crazy. Transitions from one element of the routine to the next (never easy) became way more challenging (fights brushing teeth, then fights stopping brushing teeth, etc).

Staying connected feels much more challenging during this time. Plus I worry he could hurt himself. Plus it seems to be taking him longer and longer to fall asleep after all this activity. Plus I know part of my worry about all of this is driven by my fears about the extent of his spectrum-ness, and whether I have what it takes to give him everything he needs, now and in the future.

I know he stims to meet needs. I know there should be ways to allow him to stim or to guide him to a more appropriate stim. But I really wonder how to do this effectively for him, because he seems to have a tendency to fixate on the stim. (https://www.facebook.com/autismdiscussionpage/posts/339753636104143 describes it well.) Eg, we used to have those old-fashioned plain white cloth diapers around for him to chew while he was teething, but that evolved into him stuffing as much of it as possible into his mouth and chewing it nonstop whenever he saw it, and never becoming aware that his need had been met and moving on.

We will be seeing an OT in the fall and I’m sure a sensory diet will be part of our conversation, but seems like we need something NOW, and I would SO appreciate any advice. (Also, I know there are several books that are frequently recommended here regarding sensory stuff, but as a single, full-time working mom, I’d love help finding just one, especially one that focuses on simple how’s to meet the needs.)

Thanks for reading!

[sbgrace]

I'm sure some ladies will come along with sensory or book suggestions for you.

He is routinely awake for 1-2 hours after he goes to bed, is that right? Is he staying awake even longer now that he's in this phase? Is his total sleep "enough"?

My sensory (proprioceptive is his biggest but generally a major sensory seeker in all ways), autism child ramps up crazy at bedtime too. He will fight sleep and "never" fall asleep and this especially bad if he's over-tired. Honestly, my son is so excited by being awake he doesn't want to sleep. Do you see increase in this if bedtime is late or got up early and so is more tired or similar?



Some sensory kids have a really difficult time keying down to sleep and need some help. Some people find natural calm (it's magnesium based) helps a lot. Sometimes proprioceptive kids do well with weighted blankets. My son's doctor recommended melatonin and we do a very low dose (.25 to .5 mg.) to help him fall asleep. I've done it for years.

I can't tell where in the routine the mania/running around is hitting? Is it when he's playing in his room? Is there a way to switch things in the routine so that the problem time is cut out somehow? I suspect your son needs help winding to sleep.

[baltmom]

Thank you, sbgrace! It hits as soon as we head upstairs to start the routine, so I'm not sure how we could cut it out of the routine :( Yes, 1-2 hours every night. I do think becoming overtired may be part of the picture. We pretty much stay on schedule so he doesn't really have late bedtimes, but yes, he seems to be staying up a bit later recently. Somewhat making up for it with longer naps. Maybe that cycle is making it harder to fall asleep at night. We have an appointment soon with our dev ped so I will ask about natural calm and melatonin; those do sound like they might help, as long as they're ok for 2-year-olds? Do weighted blankets create a lot of heat? In this weather, even with his window unit, his room stays pretty warm and I worry he'd be too hot with one?

[QueenOfTheMeadow]

All of what sbgrace said!  I just thought of one that seemed to work for my ds, who was similar to yours at that age!  Books on CD or tape.  Soothing voices are the best.  At one point we got the Owls of Ghohool (sp?) and there was a really screechy voice in there that would wake me up in the other room!  Not a good choice.

As far as the Melatonin and Calms, I'd say start with the Calms.  Melatonin often works for kids with these issues, and is often reccomended by doctors.  But I really suggest starting with something gentler, like the Calms magnesium or even a homeopathic remedy if you're into them.  If you look at the back of most melatonin bottles, it'll say for adults above 12, so I tread carefully with that, and would start at a low dose and build up if necessary. 

[baltmom]

Thanks QueenOfTheMeadow! I have wondered about trying books/music on CD, but have hesitated because if it turns off before he falls asleep, I think he'd get mad. And if it's on all night, will he become dependent on it to stay asleep?

Funny story about your screechy owl

[LoveChild421]

Hugs mama, my ASD son is now 7 and was also a sensory-seeker.  Bedtime was a nightmare at that age. 

First and foremost and I want to honor and address what you wrote: "Plus I know part of my worry about all of this is driven by my fears about the extent of his spectrum-ness, and whether I have what it takes to give him everything he needs, now and in the future."

I understand where you are coming from 100%- that was and in some ways still is a fear of mine.  It is overwhelming to think of.  My advice is to take it day by day and know that you are the best mama you can be.  Your love for him is the main thing he needs and I can tell you love him very much. 

As far as the sensory stuff- the OT appt will help a lot.  Why is there a wait until Fall?  Are you going through the state Birth-3 early intervention program (here in GA its called Babies Can't Wait).  Most of the time, if there are significant delays and a pediatrician recommends it, you can get a referral for private OT which insurance will cover.  You may only  need a couple sessions to get a sensory diet worked out.  My son was always calmed by brushing/deep pressure protocol: http://www.sensory-processing-disorder.com/wilbarger-brushing-protocol-who-can-do-it.html   That is what his OT started us with. 

Also, I find he LOVES a super soft plushy blanket and big squishy pillow.  I will tuck him in nice and snug with only his head sticking out of the blanket and then cuddle with him for a few minutes while we read.  He will lay there and sometimes wiggles around, but doesn't get out of bed.

[baltmom]

Thank you, LoveChild. It really does help to know that others know what the day to day is like.

He doesn't qualify for our state's EI services (Maryland) so we're working through a private institution (Kennedy Krieger). We might be able to get in to an OT sooner, but until the last few weeks, the social stuff was my greater concern so that's where I've been focusing. We see our dev ped in 2 weeks and she may be able to help us get moving faster. I'm self-employed and buy our insurance myself, so some services are covered and some are not, and I'm still figuring out which is which.

I have the feeling he will like being tucked in tight too. He's still in his crib for now, and moves around for most of the time until he falls asleep. And his room is so hot right now even with window AC that I wonder how the tucking in or a weighted blanket will work. One more reason to move somewhere with central air...

Thanks so much for sharing - it means a lot.
 

[Fay]

My kids stim to stay awake when they are overtired.  They will even slap their own faces to keep themselves awake.  If they stop moving for 5 minutes, they are sound asleep!  To slow things down, get heavy pajamas, a weighted blanket, tight good night hugs.  If he will snuggle and stay still for a bedtime story or lullabies, that's even better.  One thing that really helped my kids was taking a bedtime walk at dusk - mild exercise combined with low light made them feel sleepy and helped them slow down - I think it also stimulated production of natural melatonin in their bodies.  It's really a matter of self-regulation and understanding the feeling of drowsiness.  My younger son is very verbal, and he says he does not like the feeling of dizziness and weightlessness as he falls asleep - that's why he stims.  Holding him tight as he falls asleep helps him feel anchored.

[Azik's mom]

We have a terrible time at bedtime too but it has gotten better.  Age is probably a factor but Ive also found that ensuring that he is has active activities during the day also helps.  Now that it is warm I let him have all the time he wants in the backyard and also have some time swinging.  When it gets too difficult I roll him around in blanket like a hotdog and give him deep pressure massages.  He loves it and it tends to get him off to bed.

[baltmom]

This is all so incredibly helpful!

Last night I used a large sheet in his crib and tucked him in tight all the way around. He seemed much calmer while falling asleep, and was asleep in a little over an hour as opposed to two! It was just one night, so we'll see, but I'm hopeful that we're onto something. By morning he was on top of the sheet and I'm not sure when that happened, but as long as it works for the key period...

Sometimes outside time before bed seems to help, but other times it has seemed to wind him up more. A relaxing walk tends to turn into an active run. He does get lots of active time earlier in the day.

I think that not liking the feeling of falling asleep is a big part of it. I actually suspected this back when he was an infant and always fell asleep in my arms after eating. There was almost always a very brief cry, and then he'd be out. Lately I've been telling him to relax your brain, relax your body, and let the sleep come. Then he asks to see the sleep come

I don't know what I'd do without this community.

[Tigerle]

This is what helped our oldest (most likely not ASD, but has autistic looking traits) when this was at its worst (age 4):

A magnesium drink at night (I live in Europe and melatonin for kids is illegal here, so didn't bother trying that one).

Occasionally toothbrushing with the electrical tooth brush, for sensory variety.

A strong rubber chew toy (stole it from his baby sister, but I am glad he had it when he needed it).

He didn't like heavy blankets, but liked a big beanbag at his feet to kick against and a big fluffy pillow, so that is something that might work on hot nights too (he currently sleeps with just a sheet, it's been very hot here too and we don't have AC).

Most important for us: deep tissue massages, as a reward for refraining from doing other activities (hitting me, chewing on or yanking my hair).

[Emmeline II]

Originally Posted by Tigerle 

This is what helped our oldest (most likely not ASD, but has autistic looking traits) when this was at its worst (age 4):

A magnesium drink at night (I live in Europe and melatonin for kids is illegal here, so didn't bother trying that one).

Are you including the UK in this? A UK mom on my ADHD board on another forum had to get a prescription from her child's doctor, but it otherwise was not difficult to obtain.

[Emmeline II]

Originally Posted by baltmom 

This is all so incredibly helpful!

Last night I used a large sheet in his crib and tucked him in tight all the way around. He seemed much calmer while falling asleep, and was asleep in a little over an hour as opposed to two! It was just one night, so we'll see, but I'm hopeful that we're onto something. By morning he was on top of the sheet and I'm not sure when that happened, but as long as it works for the key period...

Sometimes outside time before bed seems to help, but other times it has seemed to wind him up more. A relaxing walk tends to turn into an active run. He does get lots of active time earlier in the day.

It would be a good idea if you could keep a journal for awhile including what you did, how he reacted, and how long it took him to get/stay asleep. By the time my ds was school age it would take hours for him to get to sleep; melatonin helps a great deal and is available as drops for smaller doses. We also use room-darkening curtains and a Sunset Dimmer for his lamp (there are actual sunset and/or sunrise light fixtures available too). My ds has ADHD and Aspergers and physical activity has never consistently resulted in him falling asleep more quickly.

Something I would ask your OT for help on is brushing with a therapy brush and joint compressions; this helped ds but was difficult to fit in at the end of the day, so he reads at night with his Sunset Dimmer set after taking the melatonin, and we do the joint compressions/brushing in the morning to help him relax/wake-up (he is so not a morning person). Ds also sometime uses Wai Lana's Little Yogis Daydream CD, but there are several CDs out there with a similar concept.

[baltmom]

Thanks so much for the great suggestions. I think he will love the beanbag one - he is always pushing anything available with his feet. Couldn't use a booster seat at the table cause he'd just push away. He's still in the crib so right now I think a beanbag would just become a means of escape but I will plan to introduce it as part of our switch to a bed.

I love the journal idea, and started it right away. Maybe it will help me begin to see some consistency in the inconsistency...

I can't wait for our OT visit - really want to try brushing, compression, massage - anything. Hoping for good ideas to make it fun. Right now anything I suggest that isn't directly playing with toys is met with resistance...

Melatonin, magnesium, Calms Forte... ??? So many options. Is it just a matter of finding the best one for your own particular kid?

Update: we had our second dev ped visit yesterday and she gave what I guess is a tentative diagnosis of "mild, high-functioning ASD." This feels very right to me. I was so happy to hear her say she thinks he may always be successful in typical situations, that our job is just to continually find and give him the tools and skills he will need to succeed there.

[lisacal]

Hi--My daughter is older (now 10), and we've been working with an OT for 5 years.  She also has trouble winding down before bed.  I thought of a few things that may work.  However, she gets tired of certain tools and we switch them out often, depending on her mood.  We use a flannel bag filled with rice as a modified weighted blanket that my mother in law made.  I put it on her lap as she reads in her bed for about 20 minutes.  It gives her just a little bit of deep pressure to help her calm.  She also has a chew tube that her OT made for her, she also uses it while she reads or while we talk on her bed.  I brush her when she wants it, and her favorite activity when she was about 6 was to make her into a "hot dog" or other food.  I'd wrap her tightly in a blanket, and she would call out the "condiments" she wanted, and would either "chop onions" on her back (light karate chops), or "spread mustard" (smooth firm pressure on back), etc.  She loved it, and we always ended with calming ones.  I know you're dealing with a much younger child, but I thought you could modify these.  Good luck!

[baltmom]

It's good to hear that even when one strategy gets rejected, another may become welcome.

One thing I struggle with is that everything seems to be activating for him - even what I would think would be a calming touch feels stimulating to him.

[Tigerle]

Originally Posted by Emmeline II 

Are you including the UK in this? A UK mom on my ADHD board on another forum had to get a prescription from her child's doctor, but it otherwise was not difficult to obtain.

No, every EU country has different regulations for prescription drugs, this is just for where I happen to live, so it may be different in the UK. I am sure i could get it over the internet, but was afraid of hitting on a possibly dodgy source. As the other strategies helped, I didn't bother following up on melatonin. I merely mentioned it to explain why we never tried it and ended up using magnesium.

[EmbraceLife]

Thanks for the post.  I have a sensory seeker as I'm discovering and learning.  I'm new at this and love all of the suggestions.  We also take 1-2 hours to "settle" and stop bouncing.

[rosadesal]

Hi! These are all great suggestions (I'm taking notes...). My DD is 5 and we met with an OT this past week after DD had done a playgroup through my University where they pair an autistic child with a "normal" child, and through that I was able to touch base with the OT running the group and fill out a sensory profile. The playgroup itself, the environment and consciously designed activities, did wonders for DD. I should have a written report within the week and then will contact her Kindergarten about setting up an IEP. DD is definitely sensory seeking, and like one of the above posts, it seems that *everything* is activating for her. She's particularly sensitive to sound, touch (does not like touch that she has not initiated, soft touch and deep pressure do nothing, seams on socks/pants/shirts/etc. are very disturbing - this area is tough because I'm not sure what she needs!), emotional/behavioral responses, lately oral has been a huge thing (she's chewing/biting/licking everything) and she's generally seeking, always. Transitions are tough - brushing teeth, hair, bath, and bed...just to know that someone else is dealing with the 2 hour bedtimes is so validating. We have Melatonin, and a friend whose son is autistic uses it. I have Cal-Mag citrate and wonder if that would help the same as Natural Calm? Is Natural Calm for kids a powder as well? I tried it but thought the taste was awful, and DD is pretty particular about taste/texture with liquids. 

This post has been so helpful!

To the OP - how are you doing?

[baltmom]

OP here - thanks for asking - we are doing ok. The Calms Forte has not seemed to help, and the tight sheet isn't helping him fall asleep faster, but he does like it so that's nice. I think my next step is either music to fall asleep to, or melatonin. I need to find a CD player that will play music on a loop, because I think having music and then having it stop before he's asleep would be more disturbing to him than silence. I'm a little leery of the melatonin because I've tried it for myself, and learned I am one of those for whom it has side effects - was dizzy and didn't feel well for a day or two afterwards - and cannot bear the thought of him experiencing that.