Friday, December 31, 2010

Magical Blankets

Sleep has been an issue for most of Ben's life.  When he came home from NICU, he was still eating every two hours which turned me into a sleep-deprived zombie who fell asleep just about every time I sat down.  By about four months of age, though, he began to sleep through the night and all was well until he was nine months old and had RSV.  Breathing treatments disrupted his sleep and just about the time we got night time straightened out again, he got Rotavirus and threw up for 72 hours straight.  Bye-bye sleeping through the night.  That was the end of it, and I really am not exaggerating.  I wish I was.

There are a few nights here and there when he sleeps in his bed all night, but those don't even occur monthly.  He is a restless sleeper.  He has trouble winding down and going to sleep (he has always been a "sleep fighter") and has a lot of trouble staying alseep.  He gets in bed with me and thrashes about and rolls around so much that even if he is sleeping, I can't.  And then there are all the nights when he wakes about 1 a.m. and doesn't go back to sleep until 20 minutes before my alarm goes off.  Return of the Mommy-Teacher Zombie.

Of course, I thought it was my fault because I hadn't known to teach him how to put himself to sleep.  I bought a copy of The No-Cry Sleep Solution and read up on-line.  We let him cry it out.  We changed the bedtime routine to center around getting him to fall asleep in his bed.  I got up with him relentlessly every time he got up and put him back in his bed.  Nothing worked, so I had just been dealing with it (meaning not sleeping), until his occupational therapist mentioned weighted blankets to his dad.

Weighted blankets are used to calm and comfort children on the spectrum and who have other sensory disorders when they are overwhelmed or distressed.  When I started researching them online, I found a lot of parents were using them to help their kids sleep as well.  One site in particular, Dream Catcher Weighted Blankets, ( detailed the difficulties with sleep that the owner's son has had.  Eileen Jackson's teenage son has "classic" Autism and did not sleep well until she developed a safe, washable weighted blanket.  And now he does.  Since Ben's diagnosis, I have learned that his needs are just different.  That what works for other kids is not going to work for him, so this made sense. 

I was both intrigued and desperate.  Noni and Poppy jumped on board, and thanks to them, we were able to order two: a 6 lb twin size blanket in a musical instrument print for his bed, and a 3 lb lap blanket in an electric guitar print.  Ben got to choose the fabric he wanted from a website.  Mrs. Jackson nicely and promptly answered all my questions so we submitted the order.  Then, we waited.

They are completely custom-made and very high-quality, so they take several weeks to arrive, and by the time they got here, I had built them up in my sleep-deprived zombie mind to be magical blankets.  I imagined that when I covered him with one, he would instantly be asleep and stay asleep for nine hours.  Poof!  Sleeping child!

And, of course, it has not been that way.  Ben is going to struggle, and we are going to struggle to find out what helps him, but there has been a difference.  Covering him with his blanket really does help him settle into sleep faster.  It really does keep him from fighting sleep and it no longer takes an hour to get him to settle down.  Try five to ten minutes, which does, when you are so tired, seem pretty magical.  Plus, it has helped him tolerate noisy breathing treatments better, which is a benefit I had not even considered.

It has not, however, kept him in bed through the night, but I think this is because he throws the covers off in his sleep.  I am considering making it the only covering on his bed for awhile to see if he will keep the one weighted blanket on through the night to keep him asleep.  It will require trial and error, just like anything else.  It isn't magical--nothing is going to be for Ben-- but it is helpful and I will take all of that I can get.

Saturday, December 4, 2010

Haircut Horror

Last night, Ben got a hair cut.  Ben hates haircuts.  He has always hated haircuts, and when I say he hates them, I don't mean he protests, pouts, and whines.  I am talking about a screaming, shrieking, crying, kicking, writhing away from the scissors, hands over his ears hatred of haircuts, along with a big dose of "Oh my God you are going to cut my ears off" panic.  And it isn't getting any better.

Last year, after a particularly difficult haircut, I decided we were done.  It was just hair, I reasoned, and not worth sending him into such a panic and causing such a trauma to him, so I let it grow for about six months, declaring that he would just have long hair and that was okay.  The problem with that is that Ben has thick, fine hair with no curl at all, so it just kind of hung over his ears and eyes and bothered him.  Then the weather turned warm, and his head would get sweaty and make him miserable, so we got a haircut and it was a horrifying experience for everyone involved, as usual. Since then, he has been getting his hair cut sporadically whenever it gets long enough to start bothering him.

Thank goodness for my friend Kim, who has the patience of Job and the steadiest hand I've ever seen, because she comes to the house, deals with all the screaming, and cuts his hair amidst a chaos of kicking, wriggling, and shrieking.  If she ever stops agreeing to cut it, he really will have to grow his hair down to his knees, because I doubt anyone else could do it. 

The biggest problem is that he just isn't outgrowing the behavior, and we are out of tricks.  I have tried talking with him, watching me get a haircut first upsets him even more than when he just has one on his own, and reading the charming book I found (Bippity Bop Barber Shop by Natasha Anastasia Tarpley) about a boy getting his first grown-up haircut also has the same results.  Bribery doesn't work either (why, yes, I have sunk to that level), and neither do the head massages his OT recommended.

This is apparently pretty common in kids like Ben, though I can't find any other information to help with it.  Everything I've read points out it is a sensory issue, but what do parents of kids on the spectrum do about it?  For now, the only answer I have is to continue with what we are doing, but it does worry me that having his hair cut is such a frightening experience for him.  It's really just a symptom of the bigger problem: Ben's sensory perceptions are disordered, so simple things and ordinary, routine experiences can overload and overwhelm him. 

Today, however, he has a haircut, and we have a few more months before we have to worry about it again.