Does He Ever Get Tired?

Of course I have asked myself this question a million times when it comes to Jack.  But lately I have been hearing it all over the place- a few people at Cisco asked me, his grandmother asked me, the camp counselors asked me, a kid at the OT office asked me....

The short answer is NO.  Jack never ever gets tired.  OK, once in awhile, but honestly, the only times he has fallen asleep during the day since he was 18 months old were when he was sick, or when he was on ADHD medication that caused him to wake up hourly every single night.  Does he sleep after anesthesia?  nope.  After a long day at the beach?  Not really.  Christmas night?  Heck no.  I think his kindergarten teacher has seen him sleep more during the day after this year than I ever have- sometimes he would conk out 2 or 3 times a day in school while he was on medication.  Those medications were obviously stopped. 

Jack NEVER slept as a baby- his first daycare provider, who had raised 8 children of her own, lost 5 lbs the first week she cared for him (he was 3 months old at the time).  He would nap, on someone, for 15 minutes at a time.  The bassinet- fail.  Pack and play- fail.  Co sleeper STRAPPED to the bed?  Fail.  I moved out of our master bedroom that first year and slept in a twin bed with Jack.  It was the ONLY way we could get any sleep.  And I went back to work full time when he was 8 weeks old- I had to sleep somehow.  He would be up ALL DAY at family events, or anytime we were out.  People would say things like "wow is he going to sleep when he gets home."  Ha I say.  Saying that out loud was the ultimate curse and he would not sleep at all.  Now I know that these were signs of what was to come- at the time I just felt like a failure as a mother.  I even had a mommy friend who when she had her second child (who was a horrible sleeper vs her first who did great) said to me that she just thought I wasn't doing a good job getting Jack to sleep.  Before she had her second child- then she got it.  If you've had a poor sleeper, you know exactly what I am talking about.  The smug parents who think they are just "doing it right".  I've got news for you- it's not YOU.  It's them.  The first time I put Nate in the bassinet and he just curled up and went to sleep?  I cried with relief.  So THIS was what everyone was talking about!  They DO sleep!  And Nate is still a great sleeper- no intervention needed.

When Jack was about 14 months I decided it was time to lay down the law.  We tried crying it out- he went for nearly 2 hours and then puked.  We tried again- same result.  There was NEVER that whole "self calming" thing with Jack.  In fact, I had no idea what that was until I had Nate and he did it (soooooo weird).  So...after several weeks of trying this, I dragged the twin mattress into his nursery and slept on it, while I weaned him into the crib.  The process took about 3 months.  He could cry it out if I could at least hold his hand through the crib.  He would eventually calm down.  So this is what I did.

When he got a new toy, he would be up all night the next night.  He could not shut off- he could not stop thinking about it.  Most of these toys were planes, so if he had them with him, he would lie there and just continuously spin the propellor- all night.   I would have him leave the toy downstairs, and he would have a meltdown.  I took to cutting a picture of the toy from the box and putting it into his bed with him.  This worked....sometimes.

To this day, Jack wakes up at least 3 nights a week, multiple times.  I have not slept in 6 YEARS.  I had to get a white noise machine for Nathan when he was a baby so that his big brother would not wake him up in the middle of the night! 

So to the professionals who are no doubt exhausted after trying to keep up with him all day the answer is once again, no, he never does get tired.  But me?  I am tired.  John is tired.  After six years, we are really, really tired. 

Sleep and the Time Change

Ahhhhh...daylight savings time.  I am sure I will appreciate the extra sunshine.  I planned carefully last night, put the boys to bed 30 min early (splitting the difference) and hoped for the best.  I needn't have bothered.   See, Nathan is very flexible and will have no issue going to bed at a slightly earlier time tonight.  And Jack?  Well.....

Daddy has been out of town this weekend on a guy's trip.  He made a booboo before he left.  Which is really not fair to say.  It is impossible to know how things will affect Jack.  So scratch that, he tried to give him incentive to be good for mommy.  He told him that if he was a good boy, daddy would bring him back a little treat.  Unfortunately, our son, our sweet boy with aspergers, can take a thought like that and let his very busy mind run wild.  There have been many times in Jack's short life where John and I have gotten really mad at each other for something either of us did with Jack that triggered one of these obsessive periods.  I have come to realize over time, that although we are better at tempering our statements (for example, if we are going somewhere he is going to be excited about, we tell him as we are pulling into the parking lot in order to ensure sleep the night before), some things one just cannot predict.  So, on that note- Jack was up from about 1am (old time) on last night asking about every 10 minutes if dad was home yet and what did he bring? 

Message to John- PLEASE DON'T FORGET- PULEASE

So planning for daylight savings time was not necessary- Jack will likely be exhausted no matter what time he hits the hay tonight.  And ditto for me!!!

Diagnosed in 2007, hahaha

#Aspergers, #Anxiety and the Potty Mouth

Ahhh yes.  Jack is prone to periods of anxiety.  And unfortunately, things seems to fly out of his mouth at these times.  And it's really whenever he is in any way uncomfortable- if we are tickling him and it's gone too far for him, if we are swinging and he's going too high.  All of the sudden a**hole will come flying out of his mouth.  It's not like we haven't corrected him over this or punished him for saying this a million times.  We have.  And I honestly don't think he's doing it to be naughty.  He's changed it to ashhole for the most part, it's hard to punish him for this, although we have made it perfectly clear that this is not ok either.  It's tough when your kid calls you an "ash".  How do you even respond to that?  When he was younger, it used to be idiot.  We told him this was not acceptable, so he shortened it to "idi".  This is legend among our family.  In fact, my coworker's entire family has adopted this term- even her kids who live outside of her home use the term "idi" to describe someone they don't like. 

So is this a punishable offense?  I know that Jack has trouble expressing emotions, and sometimes I feel like this is just him trying to express that something is really bothering him or stressing him out.  He knows these are "big" words and that's why he uses them.  I want him to express himself, just don't want a potty mouth around the house.  I guess it doesn't really matter what I want, since all of the reprimands and punishment in the world don't stop it.  Kids with Aspergers are prone to Tourette's like symptoms, sometimes I think this is part of that.  It's just hard to know how to handle it. 

This morning the four of us ended up in our big bed at about 4:45am, everyone always seems to wake up especially early on the weekends.  John went to get Nate and bring him in when he woke up.  The minute he realized that Jack was in the bed he went ballistic.  He does not want Jack to touch mommy- at all.  So Nate was on one side of me, Jack on the other.  Nate kept swinging his little legs over me to karate kick Jack.  Jack kept telling Nate he was an "ash".  Then of course he would recommence his baby lion persona of the week.  This involves the most annoying high pitched squeak you can imagine.  It is actually very authentic.  This would in turn tick Nate off all over again and the whole cycle would begin again.  Just another relaxing morning at our house....John and I ended up hysterically laughing, because really, what else can we do?  At least they're interacting right?  Ha

Aspergers and Fixations

I have frequently alluded to the fact that Jack is obsessed with airplanes.  But when I say this, I know that most of you cannot possibly understand the depth of this preoccupation.  Jack has done fairly well at keeping himself together the past 6 months or so.  In fact, I almost forgot just how intense he can get when it comes to his "area of interest".  Today, I remembered.

It all started innocently enough.  Jack was "helping" daddy paint some trim on the garage and back doors yesterday.  John grabbed a box out of the garage and told Jack to paint the box- fairly clever really.  However, Jack being Jack, painting the box was not enough.  He opened it.  He found the model of the BF-109 Messerschmitt that his dad had purchased several months ago- he put it aside for down the road, as it is for ages 10 and up, very delicate, complicated, and certainly not meant for someone Jack's age.  Jack went NUTS.  I was out at the time, but apparently John had Jack convinced that they could assemble it when he was 6 (yeah, that's next May).  A feeling of dread came over me- how long would that last?  And predictably, within the hour, Jack was asking John if he could drill a hole in the box so that he could see the propeller and bolt.  He asked this about 25 times between 4pm and 8pm.  And my anxiety was mounting.  I gave him melatonin, and he went to sleep.  I am a believer in melatonin solely for getting Jack to go to bed at night- in terms of helping him sleep through the night- not so much.  He didn't sleep through the night once this past week.  Last night, he woke up crying for the messerschmidt at 1am, 2am, 2:45am, 3:30am, and finally 4:40am.  At about 5:20, I finally took him downstairs.  And the meltdown began in earnest.  He wanted the box opened, I tried to explain over and over again that it was not really a plane inside.  Instead it was about 100 pieces, needed cement to be put together and did not even include the paint that was needed to make it look like it did on the box.  Of course this was beyond Jack's comprehension, and I can't blame him for that.  After about an hour of sobbing, I decided that the only thing I could do was take the box away.  I knew enough to expect an epic meltdown, but I had to weigh my options- one huge meltdown or an all day affair?  I chose A.  Turns out that both options sucked.

Jack hit the roof.  Climbing on things screaming, begging to have it back.  I decided to cut the picture out of the front of the box so he could hold it.  This has worked pretty well in the past when he is fixated on something- he has slept with many pictures in his bed over the years.  And it helped for about 20 minutes, then he was back at it again.  I decided to show him the contents of the box

It had no effect.  He wanted me to "fix" it.  There is no distracting or redirecting Jack when he works himself up to this point.  I remind myself over and over again that this is how his little brain is wired- that he is not being "bad", he is truly unable to refocus his attention.  But where do you draw the line?  Because his behavior does escalate, and his behavior becomes inappropriate.  I drew the line at him coming up to me, pinching me, and telling me I am a "bad mommy".  This was at 7am- about 2 hours into the fun.  Time out it was.  Jack has very high anxiety, and in the past I have found that putting him in time out and shutting the door does very little to help him understand that he did something wrong.  All he can think about is the fact that mommy left him alone, and he is trapped.  I certainly don't want him to feel like that.  So I leave the door open, sit in the doorway, and make him stay on his bed for the duration.  So at least he knows I am still there.  However, this takes away that whole parent getting a chance to regain their sanity piece of the puzzle.  In any case, he calmed down somewhat, and we tried downstairs again.    Unfortunately, the situation did not really improve.  The crying continued pretty much the whole morning.  He asked for "the plane" approximately every 2 to 3 minutes.  He yelled, he screamed.  After about 4 hours of this, 3 cups of coffee, and very little sleep, I found myself yelling back at him.  Oh crap.

I try so damned hard not to yell at Jack.  He is a tough kid, and the urge is strong at times, but I do my best to remain calm.  So when I found myself at this point I did what any self respecting mother would do when they are at the end of their rope.  I loaded the boys in the car and drove....and drove....and drove.  Across the bridge, almost to Delaware if I'm being honest.  Just to give you an idea of how tired Jack was, he fell asleep as we crossed the bridge, so after 20 minutes in the car.  I can count on both hands the number of times he has fallen asleep in the car in his life.  Not often.  Sadly, after a 20 minute nap, his picture of the plane slipped out of his hand, jarring him awake, and starting the crying fit all over again.  This continued for the whole drive.  I heard "I hate you" come out of my son's mouth for the first time today- that stings.  Being the exemplary parent that I am I turned up the music.  Mommy had to get some kind of break- especially since my eyelids were fluttering a little too frequently for my taste.

OK, so we made it until about 10:45- I called my parents.  They live on that side of the bridge, and "fresh" people would surely help right?  Ummmm....kind of.  We headed to their house, where Jack proceeded to tell them all about the plane.  My dad distracted him with his John Deere combine, and slyly hid the picture.  I could tell he thought he had solved the problem.  Ha, I say.  About 3 minutes later Jack was hysterical, looking everywhere for his plane.  There are times that I know my parents have thought I was exaggerating about Jack's obsessiveness.  He sleeps through the night at their house, is often distracted by the different toys, and of course my mom has the bird book.  I do not think they doubt me anymore!  He asked for that plane AT LEAST every 2 minutes the entire time we were there. About 2 hours.  At one point I looked at my mom and said "I just can't".  She said she couldn't even imagine how exhausted I must be, and I headed to the guest room for my own 5 minute time out.  I guess my parents decided to take the boys for a walk, because my dad came in to tell me that I should come sit in a chair in the family room while they were gone and found me curled up on the floor between their Murphy bed and a spare file cabinet.  He looked at me like I was on crack when I told him I was just fine where I was.  By the time I left, my dad was saying he was exhausted from Jack's antics today, and said he understood why I didn't feel the need to move earlier- too much energy would be exerted.  Let's just say that both of my parents hugged me extra tight before we left.

It was about 1:15.  The Ravens game was on.  John was undoubtedly entrenched in that- and Jack FREAKS when football is on in our house for some reason (although he didn't even notice it was on at granddad's).  I decided to drive around for a bit longer.  Nate was asleep within 5 minutes, as it was his nap time at this point anyway.  Jack fell asleep AGAIN before we reached the bridge.  We are talking exhausted here.  Victory!!!!  Only problem was that mommy needed serious coffee....but I knew better than to go through a drive thru.  That would wake Jack up immediately.  So I drove and drove some more.  After about 40 minutes it happened- I got stuck at a traffic light.  And Jack was off and running again.  He had dropped his picture and he went completely ballistic.  I repeatedly told him that I was not willing to get into an accident in order to pick up his picture and he would have to wait.  He was unable to listen to logic at this point though and just became more and more hysterical.  He woke Nate, who just stared at him like "what the f*** dude?".  We arrived home and Jack started back in on daddy.  I decided to take him up to his room and read with him for awhile- my last attempt at distraction.  He fell asleep AGAIN.  I guess crying all day is exhausting even for Jack.  He slept until 5pm.  I don't even want to think about what tonight is going to be like.  He hasn't napped in 3 years.  It could be ugly. 

exhibit A

He is still talking about it almost constantly, but he is at least calmer right now.  I walked away for awhile- for sanity.  It is painful to watch your child go through this- when Jack gets like this there is very little I can do for him.  His brain just cannot let go, cannot allow any other thoughts in.  It's disturbing to watch.  It has been so much better recently- but today was a blast from the past, and not a pleasant one.  Here's hoping that it was just a momentary blip. 

As always, a little info:

http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm

http://www.myaspergerschild.com/2008/09/aspergers-obsessions.html

Melatonin, schmelatonin

Dag nam it!!!  My great white hope has been at least temporarily dashed!  I mentioned in a recent post that I finally broke down and ordered melatonin for Jack- it is a natural sleep aid that many parents I have spoken with use for their children on the spectrum- particularly kids with aspergers.  Those brilliant little minds just can't seem to shut down enough to sleep through the night.  And after 5 1/2 years of not sleeping through the night- John and I are well, tired.  And John is cranky.  I, of course, am completely charming at all times (right honey??? lol)  I figured that this weekend would be a great time to try it out, as Jack is already exhausted to begin with from his first week of full-day kindergarten.  Surely this combination would give us a really really good chance of a full night's sleep.

So I gave him a dropper full of melatonin at about 6:45 last night.  By about 7:20 his little eyelids were drooping, and John and I were practically salivating at the thought of him going to and staying in bed without a fight.  He passed out almost right away.  And Nathan being Nathan fell asleep while I was rocking him and singing (maybe it's a defense mechanism, haha).  So by 8:15 we were free!  Usually Jack is up and down at least 10 times before going to sleep, so this in and of itself was a pretty big victory.  We had a nice, quiet evening, went to bed, and then.....

3:15- moooooooommmmmmmm!!!!!  help, starscream's gun!  where did it go? where is it?  help, help help!!!  You see, here was my first mistake.  Yesterday afternoon, as a reward for being a good boy his first week of school I gave him a small transformer that becomes a plane.  I had to give it to him in the afternoon because of school, which is unfortunate because the first rule of giving a new toy (particularly one that relates to an obsession) to a kid with aspergers is that it must be given to them first thing in the morning.  It is the only way that they have the chance to calm down a little and be able to unwind enough to sleep by bedtime.  We have had many a sleepless night when Jack has been given a new plane, or robot.  We once gave him a ride-on airplane, right around the time Nate was born, as a big brother present.  I had to cut a picture of the plane off of the box and tape it on the wall next to his bed in order to get him to lie down.  And none of us slept a wink that night.  I kinda hoped we were past that.  Anyhoo, I found the gun- without my glasses on- it's approximately the size of my thumb, so that was pretty impressive.  I told him to stay in bed.  returned to our bed

3:45- thud!!!  mommy, daddy, my bed is too crowded!  I have to sleep with you!  OK, so the reasoning behind this excuse is a mystery to me. 1 twin bed to yourself, or a queen bed with 3 people....which has more space?  Right?  So I walked him back to bed, told him if he wanted to keep starscream he'd better stay put this time, and went back to our bed.

4:20- I can't be alone!!!! I'm so lonely!!!  Mooommmmyyyy come here!!  I need protection!!!  I sent John this time as I was not going to be so comforting at this point.  Plus, John often conks out while in there, and Jack follows suit, and then everyone sleeps.  No such luck.  John came back to bed after the requisite 10 minutes and the rest of this early morning hours were spent shuffling back and forth, trying to get Jack to stay in bed, and finally giving up at around 5:30. Then tolerating him lying between us and alternately kicking us in the face and shins depending on what position he had thrashed himself into at that point for about an hour.  Then- breakfast.

So I remain my same zombie self.  I fell asleep in the OT waiting area this morning, as usual.  We WILL try again tonight.  Pray for us.  and for Jack if he doesn't sleep.  Kidding.  kind of.

SEED

Things are settling down now after the power outage, etc.  During times like that it's hard to think about plans, next steps etc.  But there are some things on the horizon that I am working toward right now.  Time to refocus my efforts!

I got a call from Johns Hopkins last week related to the SEED study.  SEED is the largest study to date in the U.S. seeking to identify risk factors for autism.  It is funded by the CDC and is being conducted in multiple different locations...California, Colorado, Georgia, Maryland, North Carolina and Pennsylvania.  This study involves a bunch of historical information from both mom and dad, identification of possible genetic factors, problems during pregnancy, early childhood, etc.  It also seeks to identify other concurrent health conditions (ie, conditions that seem to occur with autism- think seizures, celiac disease, psychiatric disorders, ADD, etc).  SEED is unique in that it accepts, in fact seeks out children that have other physical and developmental disabilities in addition to autism.  Most studies about autism only look at children that have this disorder and this disorder only.  So a lot of the sharing would be with mom and dad- and mom and dad would give saliva and blood samples in order to determine if there is any genetic link involved.  John and I both feel strongly that we want to know this.  We have accepted that our family is complete, although this is not what we originally wanted.  Our boys need too much of our attention and knowing their needs, we could not in good conscience bring another child into our family and possibly deprive that child or deprive my boys of what they need.  And there is the huge unknown factor....genetics.  Would all of our children be on the spectrum?  The odds thus far are not in our favor, 2 for 2.  We both have siblings that are either still working on their families or have yet to start them.  We want to have as much knowledge about the roots of our boys' conditions as possible to share with our families as they plan their futures.  And we want to know for the sake of Jack and Nate and (god willing) their possible future families.  So that alone makes this study worth participating in.


Nate will have to endure the same developmental assessments that he has in the past, as well as a brief physical exam.  Nothing earth shattering.  There is no intervention associated with this study.  It is solely for informational purposes.  Autism is such a mystery to the medical community at this point....if there is any way that we can help the cause, we are going to do it.  And we may gain some valuable information for our family in the process. Win-win.  They are just now recruiting for the next leg of the study- there have been groups recruited and tested since 2009...we signed up for this study back in April.  


Nate has been challenging us a bit this past week.  Frankly, he is being a two year old to the fullest extent.  It is very frustrating with him because while he is being extremely obstinate, he is unable to really tell us what is making him mad or what he is refusing, or why.  So he screams.  For instance, ever since we all slept in the family room during the power outage, he is fighting the crib like nobody's business.  Not unusual at this age, but all the information we get from him is "no!" "go!", or occasionally "go down".  Is he afraid?  Is he mad?  Insomnia?  Worried about global warming?   Not sure.  Although my gut believes he is pissed- he liked the other arrangement much more.  But he has been screaming in his crib every evening and waking up at 2:30am for more of the same.  Last night it went on until 4:30.  Every time I start to feel guilty, or worried that he is really sad or afraid, I hear him make his trademark, angry, what we call "german" sound.  Dacccchhh!  I will have to get a good recording of it and post it because it is hilarious.  And very very purposeful; and defiant.  Luckily by tonight he was too flat out exhausted to fight.  We took the boys to Rolly Pollies this evening and ran them until they dropped.  Pray for us that he sleeps tonight.  Between him and Jack (who was also up twice last night- par for the course) we were really dragging this morning.  Nate is also fighting his diet more than he ever has before.  Refusing the food we give him at meals and then getting out of his seat and literally tackling Jack for what he has.  I think this is a good thing- he is more cognizant of the fact that Jack has something else and he is MAD.  He wants bunny graham crackers too!  And he is certainly communicating that.  


He is also Mr. Destructive.  Knocking everything down with wild abandon, then lying amidst the rubble and laughing like a little maniac.  See exhibits A and B.  Hey, if being "naughty" is a good sign, things are looking up!!!  

                A

B

Go the Bleep to Sleep!

So I just told my husband it would be best not to talk to me this morning.  Last night was ROUGH.  Our children....well I am convinced they are trying to kill us.  Slowly.  Tortuously.  There is a reason that sleep deprivation is used as a form of torture.  For the past 5 years, John and I have been living proof of why.  I was one of those parents who when they first heard Samuel L Jackson's narration of Go the F*** to Sleep, actually fell asleep!  Ha, just kidding, but there have been many times that I have wanted to read it to my kids, no matter how inappropriate.   If you are easily offended, please skip the video....after last night, I am a bit out of it.

Jack, who is FIVE, sleeps through the night approximately three nights a week.  Seriously.  Luckily, when he wakes these days, he is usually pretty easy to get back down.  That didn't used to be the case.  Let's just say that when he was about 15 months old I spent approximately 2 months sleeping on a mattress on the floor of his nursery trying to get him to accept his crib.  I have read all the sleep books.  Tried all of the methods.  Notta.  Crying it out?  I did that once.  An hour and 20 minutes in he was hyperventilating and so was I.  So to put it mildly, we have struggled with this issue a lot.  And of course, until I learned more about Asperger's, I didn't know that sleep disturbances are a very common symptom.  I remember at one point when Johnson and Johnson came out with their lavender bath products and advertised "helps baby sleep better", John looked at me with a ridiculous amount of hope in his eyes.  Our kid smelled fabulous when he was screaming in the middle of the night.  Now we use epsom salts...I don't really think that's doing anything either.  Next step will be melatonin, which I have heard wonderful things about, but we shall see.  I mean this is the kid who gets hyperactive with benadryl, so who knows.

Nathan....oh Nathan.  He has always been the "good" sleeper.  Since the day we brought him home from the hospital.  Until now.  Last week when we were in Bethany he boycotted the pack n play, and in the interest of everyone sleeping and having a nice vacation, we let him into bed with us.  Of course this was a big mistake.  Of course I knew this.  Because he may have autism, but more importantly, he is 2.  And he is becoming Mr. Obstinate.  Now, I am told by his ABA teachers, doctors, etc, that being "naughty" is a really good sign (he is thinking independently, knows what he wants, is communicating, etc) and in theory I completely agree.  I invite all of these parties to join me in the middle of the night.  Mr. Nate has been up since 2:30 this morning.  Yup.  Good luck to those teachers today.  We have been very lucky, he hasn't figured out how to climb out of the crib yet, but I can feel it, it's coming.  I keep finding him screaming with his little leg up on the rail, his curtains pulled into the crib, all toys out...he is plotting, haha.  So of course about half an hour in to Nate's shenanigans we hear a thud and looked at each other "oh crap"....and then running.  There's Jack!  Even at 3 am he runs into the room...."mommy, daddy, Jack and Natey, we are all P-38's and we are all black and is your propeller spinning, how many blades do you have, are you taking off?"  Ughh.....daddy got the easier end of the deal last night, he took Jack back to bed and they were both almost instantly back to sleep.  Nate had lots of fun kicking me in the head, pushing up my shirt and grabbing my post-baby belly (he loves my skin for some reason, great for the self-esteem,ha) and throwing his cup at me and saying "more" over and over again.  Finally at 4:30 I decided that he was going to have to cry it out.  And he did.  Out, and out and out.  He never calmed.  On a positive note, he was screaming "go" quite a bit and when I went in to reassure him and was leaving he yelled "no go".  Amazing the language that pops in when he's really angry.  

So as I am writing this, both boys are lying on the floor with droopy eyelids.  Fantastic.  Bet their sitter will get a great nap out of them today.  And then they will be ready for more fun tonight.  To the IT department at my job....if I should call today and tell you that my laptop shorted out because I spilled a glass of water on it I am lying.  I actually drooled on it while holding my eyes open with toothpicks.  Sorry about that....