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, (http://www.weightedblanket.net/) 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.

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.

Thankful

I am most thankful for my son--for having him in my life to love and learn from--but I am also especially thankful for all of the progress he is making.  He is still behind in many things and has many challenges ahead of him, but his speech is coming right along and he is constantly making progress and saying new things.

Until he was 3&1/2 (October of '09)  Ben did not talk.  He would say a word once or twice and then "lose" it.  He did not communicate verbally at all.  At three, he began saying "Mommy" and "Daddy", and he learned four more family names that summer.  Then the progress stopped, which dashed my soaring my hopes, until October, when there was an explosion of speech:words, sentences, sassiness, and even jokes all at once.  Due to Autism, he primarily repeats things he has heard (echolalia) or communicates basic needs, but he does tell us "I love you" and he is beginning to talk in conversation form, although he sometimes has to be prompted to answer questions and respond to others.

Today, the day before Thanksgiving, I am most thankful for conversations with my son, like the one we had this morning:

Me:  "I need to go fold laundry, Bear."
B:     "No.  You stay here and snuggle me."
Me:  "Well, who will fold the laundry?"
B:     "Curious George."
Me:  "Curious George?  Can monkeys fold laundry?"
B:     "Yes.  Curious George loves to fold laundry!"
Me:  "But is he good at folding laundry, or will he make a mess?"
B (giggling):  "He is good at folding laundry.  You make a mess!"

Of ARDs and Trick or Treats

Ben's ARD that I was so riddled with anxiety over went about as well as possible.  Everyone brought their A games and had all of the bases covered.  The school district's Autism assessment team rated him at 33.5 on the CARS scale, which is a standard assessment tool.  His doctor in Lubbock had assessed him at 34, so they were close to that.  29 is considered non-Autistic, and 33.5-34 reflects how high-functioning he is.

They are continuing speech therapy services and will start a little bit of OT-- just 15 minutes weekly, so we are definitely keeping his private therapy as well, which will give him an additional 45 minutes weekly.  Thank goodness his father can take him to his early afternoon appointments, because the therapy clinic has a packed schedule.  His teacher also has a system in place to help Ben focus and work on his fine-motor skills which are so far behind.  At 4&1/2 he knows the alphabet, colors, shapes, numbers, and how to spell his name, but he can't actually write any of it yet.  He just still can't grasp the pencil correctly and doesn't have enough control to form letters or shapes on his own yet, though it does seem like he has decided to be right-handed after going back and forth for a bit.

I still have some concerns, mainly whether or not all of those interventions will be put in place consistently and will be enough to get him on track, and I am also very concerned about his placement for  next year.  His teachers and diagnostician are not ready to talk about it yet because they want to see how much progress Ben does or does not make this year, but I am a little wary of having him put in PPCD for a third year.  I would love for him to start kindergarten on time, but the truth is he just may not be ready for it.  And that is something I will just have to accept.  As long as it is really in Ben's best interests and he is able to continue to make academic gains, I will be okay with it, but circle time already bores him so I do worry about another year of the same things.  Worrying about him and working to ensure his needs are met will probably be a constant issue, but that's okay.

On a bright, shiny note, Ben was healthy on a holiday for once and was able to trick or treat.  He dressed up as Handy Manny (one of his faves) and went to relatives' houses first, and then around our block with Mommy and Daddy.  He did very well, with some coaching, and did not have any major freak-outs.  He said "Trick or treat!" and also thank you, even to strangers, but he wasn't interested in waiting for people to give him a treat, not when there was candy right in front of him in a bowl for the taking.  Fortunately, my neighbors are kind and were very sweet to Ben.  He sometimes gets distracted and doesn't want to continue with whatever game plan we have, but I would call our Halloween very successful and fun.



Anxious

Ben's ARD meeting(Admission, Review, and Dismissal--it only took teaching for about six years to figure out what that stood for) is Monday afternoon, and I am so anxious about it I can hardly stand myself.  His last ARD did not go well, seeing that his PPCD (Preschool Program for Children with Disabilities) teacher saved up a bunch of concerns, all the while telling me everything was fine, and then listed about a dozen behavior concerns in a note read by the diagnostician while she wasn't even there.  I felt like a bomb had just been dropped on me, while the diagnostician and pre-school teacher frowned at me and said, "Well, surely she's made you aware of these things before.  They can't be a surprise, since it is so easy to email you." 

Yes, he is my son, and yes, a very few of those behaviors were concerns at home, and yes it is VERY easy to email me, but a lot of them were things we had never seen, since he is far more anxious at school than at home and that is when those behaviors rear their ugly heads, and she had indeed FAILED to mention them.  So, YES, it was a surprise, much like an earthquake.  We had to have a principal/parent conference to get down to the bottom of it somewhat and establish communication schedules.  I am not exactly worried about that kind of thing this time, since I have the Autism Assessment Summary and we had already had him assessed by a private doctor before allowing the district to assess him (which I highly recommend doing, by the way), but I do have worries.

I am afraid they are not going to provide Occupation Therapy services, or that they won't allow him to have it frequently enough.  I am afraid he will struggle educationally because of his Asperger's issues and that they won't do enough about that.  I am afraid his teacher is not actually going to be able to carry out the intervention plan that the committee chose.  And I am very afraid she won't tell me if she can't.  Ben talks much better now, but he can't explain whether or not something like that took place.  He does have a different PPCD teacher this year, but I have found that the most awful thing has happened.  I don't trust his school, or even teachers in general, very much any more. 

I am a teacher and I work my butt off teaching in this very same district and it has been a very harsh wake-up call to realize that this is a problem in my district, in my son's school, and with my son's education and chances for success.  I am far from perfect in any aspect of my life, but I do work hard to be a good teacher and to give all of my students, regardless of their challenges, every chance for success.  I do believe having Ben and being on the other side of things has made me a better and more understanding teacher, and while I would like to believe that would be true of all teachers who are parents (or who are not), I have learned that is not true.  Ben's education and future are just too precious to gamble with, and so of course I am stressed about it.  Severely.

The Very Public Eye

I took Ben to grocery shop at the local super center last weekend, and, unfortunately, noticed the same thing I usually notice: the staring.  It wasn't very bad that day, as he didn't throw any tantrums, but it did happen.  And it did bother me.

Walking through the parking lot holding my hand and sitting in the grocery cart with a juice box, Ben usually looks just like a non-Autistic kid.  He doesn't stim (flap or rock repetitively).  He smiles and talks and tells me which groceries he likes and which he doesn't. 

Sometimes, when the bustle and noise of Wal-Mart are just too much for him, he shrieks and throws tantrums or puts his hands over his ears and cries, but that isn't what happened this time.  On this particular day, he hummed.  Mozart and "Peter and the Wolf".  Loudly.  Throughout the whole entire store.  And he pretended the bananas were musical instruments.

People did stare, both at Ben and at me.  I suppose, if you aren't familiar with Ben and have never encountered a pre-schooler who loudly hums classical music while pretending a banana is a flute, that you might take a second look.  I might take a second look.  Heck, there was a woman there with a large blue and pink weave that was pretty startling, and I certainly took a second look at that, but I didn't stare at her until she left the aisle.  And when I saw her again five minutes later, I didn't stare again the entire length of the aisle.  It's not polite, and while I am hardly Miss Manners all the time, I know how uncomfortable it is to be stared at and I try to be mindful.  What people wear or what their kids do really is their own business.

Thankfully, Ben doesn't seem to notice, but that doesn't make it all right to do it.  He is a child.  And while he may not be infatuated with Spider Man and doesn't sit in the cart clutching Buzz Lightyear, he likes what he likes and those things just happen to be musical instruments.  It might be a little odd for a four-year-old to be immersed in pretending to play a bassoon, but it's not a harmful interest.  And the humming of Mozart may have been a bit loud at times, but we weren't in a library and he did not scream or get upset one single time.  I would not think a thing about it except that people stare.

And, really,  I still don't.  We nurture that interest, just as we would if it were soccer or dirt bikes or Buzz Lightyear.

This is when that "Didn't your mother teach you not to stare?" T-shirt would really come in handy.

Not the End of the World

A friend of mine who has a child on the spectrum said, upon hearing that we had decided to suck it up and have Ben tested, "Remember, even if it isn't what you wanted to hear, it's not the end of the world." 

At that time, I was still hovering between denial and sort of realizing Autism might actually be a piece to Ben's puzzle.  But despite having begun to see some symptoms in him, I walked into that office determined to disagree with whatever the doctor said, no matter how smart and experienced she was.  I had read about Asperger's and just knew that wasn't it; maybe he was on the spectrum somewhere in that murky low end, but he did not have Asperger's.  I had prepared myself to hear "Autism Spectrum", and I had even begun to try to accept that, telling my mom, "I've decided it just doesn't matter.  The diagnosis won't change him and I will love him just as much as I do now."  But I was still determined that, whatever the doctor said, I was going to strongly disagree.  It was my issue with defiance that was speaking.  I'll just blame it on that.

I was sort of right, which means I was also sort of wrong.  I was wrong that it wasn't Asperger's, obviously, and I was wrong that I wouldn't be bowled over by that doctor's great big brain and all her experience.  Even though the words on the Internet did not fit my child, her deeper knowledge of Asperger's did.  It explained quirks that I knew were issues but attributed to other things, and it also explained quirks I didn't even know were concerns.

I was right that, in the big picture of our lives, it doesn't matter.  And I was right that, of course I love my child just as much as ever, with that all-powerful, end of the Earth-reaching Mommy Love that we do not know exists until we become parents.  It has also helped me understand him better, and I am learning more and more ways to help him.  And even though finding ways to help him will probably be a life-long journey, knowing about that little piece of Ben's puzzle has definitely added to our lives and has not taken anything away.  I still have my wonderful, smart, funny, sweet, mischievous Ben and I love him more than ever.

The Asperger's diagnosis was not the end of the world- not even close.  It has been the beginning of a better understanding of my child, less harsh judgement against myself as a mother, and that journey we are on to help Ben be happy and successful.

A Giant Leap For Ben

Ben hugged a classmate today!  I picked him up from his daycare this afternoon, and he ran to me with hugs and kisses and then said, "I want to tell Kaden good-bye."  This in itself is huge, but I was confused.  He has a cousin named Kaden and used to have a school (PPCD) classmate named Kaden, but I was not aware of a daycare Kaden.  Sometimes he gets stuck on the names of people, like former classmates and teachers, so I asked him if Kaden was in the room.  He ran to a little boy and said "Bye bye Kaden!" and waved.  Kaden turned around, smiled great big at Ben, and said, "Bye bye Ben!  I need a hug!"

And I froze.  Hugs are different from bye-byes and he is wary of people he doesn't know well touching him, and is even sometimes wary of family members hugging him.  He began to back up to Kaden like he does to more familar people, sometimes: a backwards hug, where you hug him but he doesn't have to get too close.  The other boy looked confused, so I gently turned Ben around, and they hugged!  And he smiled at Kaden and told him good-bye again!  And then Miss Brittney said they played together today! 

OMG, imagine my excitement!  I wanted to jump up and cheer! 

Ben has struggled with other kids since he was about 18-months-old and for the longest time would not even play near the other kids at daycare.  We blamed it on shyness.  His 2nd birthday party was a nightmare because of the crowd, which I blamed on his not having had a nap, but the fits and isolation at family gatherings continued for about a year.  He began to parallel play at 3 and has gotten progressively better with big groups of family and in classrooms, but he still kind of does his own thing most of the time.

So this is huge.  I know it is not a big deal at all for most 4 & 1/2-year-olds, but it is HUGE for Ben.  It gives me hope.  I know his journey will be full of social challenges, but this is definitely a good sign and has made me almost inappropriately excited.  The little steps are enormous with kids like Ben.  Enormous.

Aspies

The first time I heard the term "Aspie", it was in a news clip where a mother affectionately referred to her son as an "Aspie".  That first time, I didn't think much of it.  My son hadn't been diagnosed yet, and I was too engrossed in my thoughts about how Ben might be on the spectrum but probably didn't have Asperger's because he had nothing in common with her child.  I was wrong, of course, since every child with it acts differently and has different quirks, and while the term was in my mind it didn't make much of an impression on me.

Now, however, it upsets me, possibly to an unreasonable degree.  I am sure every parent of a child with special needs has different thoughts or feelings about this topic, just as there are as many opinions about any aspect of parenting as there are parents, but I really dislike that label.  Maybe it isn't meant to be a label, but I feel like it is--like it limits the child's identity and potential, and I am very sensitive about that.  I am sure the parents and other people who refer to kids as Aspies aren't trying to label or limit them, and probably don't feel like the kids are going to feel labeled and limited, but a positive sense of identity is crucial to children and that is one of my main worries for Ben.

When I was in college studying to become an educator, My Children With Special Needs professor (whose name escapes me but whose face is crystal clear in my memory) stressed the importance of saying that a child had a learning disability, rather than saying that the child was learning disabled.  It's the same thing really.  My son has Asperger's, but he is certainly not Asperger's.  And while it may create challenges and cause his quirks, I do truly believe he has as much potential as any other child.  And just like any other child, he deserves to be nurtured and supported, not limited and labeled.

And his identity should be true to who he really is: a sweet, mischievous, loving little boy who loves Curious George, Handy Manny, animals, books, music, musical instruments, and playing a toy bassoon while wearing his fireman's hat. It's not who he is.  It's part of who he is, certainly, but not any where near the most important part.   He can be anyone he wants to be when he grows up, just like any other child.  His journey will just be a little different than most.

Temple Grandin

Dr. Temple Grandin is a woman with Autism who is the subject of an HBO movie with her name as the title.  Claire Danes stars in it and it won several Emmys.  I have not seen the movie, but I plan to.  This is a lecture she gave explaining a little about how the brains of people who fall within the Autism spectrum are different, and why the world needs people with Austism and Asperger's.  She is very successful in her field of work, and she attributes her success to Autism.  She is an advocate for kids like Ben.  I don't always have much patience for lectures, but this is pretty fascinating and insightful.  Please check it out if you are interested.

Temple Grandin: The World Needs All Kinds of Minds

Two Words

Asperger's Syndrome.  In short, it is an Autism spectrum disorder, thought to be high-functioning because of its preservation of linguistic and cognitive development. 

If  you look it up, you will not see my son, Benjamin, in most of the descriptions or symptoms.  He does not flap.  He does not stare off into space endlessly.  He is not obsessed with pieces of toys.  He hugs, kisses, laughs, loves to be snuggled, loves to play interactive games, and loves to learn new things.  He does sometimes avoid eye contact.  He does mildly obsess over fans and musical instruments.  He has trouble with social skills and initiating play with other kids.  He does freak out in new situations and crowds.  He has a heck of a time with transitions and unexpected changes.  He can throw an impressive tantrum.  He also did not talk until he was 3&1/2, which led to some confusion when he was diagnosed, but he has struggled with some physical issues from our complicated pregnancy and his premature birth that probably delayed his speech. 

Those issues didn't cause it, I didn't cause it, and for everything I've read that claims to know what causes it, I find at least a dozen more published statements to contradict it.  It is mysterious, almost impossible to fully grasp, especially because every child who is diagnosed as somewhere in the spectrum is different in many ways from every other one.

I will tell you, hearing a doctor utter those words hits you like I imagine a Mack truck full of bricks would.  And you have to immediately decide how you are going to handle that diagnosis, as suddenly every single day becomes important in helping your child.  Are you going to try to find another specialist who might say something else?  Pull a Jenny McCarthy and look for a cure while declaring yourself a "warrior mom"?  Writhe around in denial and try to ignore it?  Buy buttons and T-shirts that say, "My child has Autism.  What's your excuse?"  Try to hide it?  Scream it from the roof tops and dare anyone to have a problem with it?

My response was, and still is, to hit the ground running to find and gather resources to help my son cope.  I have learned a great deal in the last few months but often still feel as if I know nothing.  Some days I am okay, and some days I struggle.  Every single day I am struck by the power of my love for my son, and I am constantly learning lessons and finding shifts in my attitude toward just about everything, including my students and the people in my life.  I have not, unfortunately, developed more patience, and I am constantly aware that all of the resources Ben needs are not in place yet.

I have shared his diagnosis with some people, but I am beginning to feel very strongly that it is not and should not be a secret.  There isn't anything "wrong" with him, or my parenting.  He is different, but not inferior.  He is unique and he is amazing, and he is the best gift I have ever received.

I briefly considered having a T-shirt made that says, "Didn't your mother teach you not to stare?" for those times when he freaks in public and that is all everyone seems to do, but that isn't really my way.  Having an outlet is, and that is my hope for this blog: to have a place to go to let it all out, whether the "it" be joys, frustrations, celebrations, set-backs, or anger at people too narrow to understand that all children are different, special, and valuable.

And most importantly, I hope this will be a place to celebrate Benjamin.