The Good, The Bad & The Ugly...

...but not necessarily in that order.

It was a rough weekend.  All seemed well at first.  We went to the IEP Bootcamp, 3 hours long and quite tiring from all the info we were bombarded with, but I had won one of the door prizes and received $25, so we decided to treat ourselves out to dinner Saturday night...something we rarely do anymore because it's just not in our budget.  We got home and my MIL reported that all went well with the boys.  Emerson hadn't taken a nap--nothing new there--but had laid quietly on the couch while watching a cartoon.  Thom was tired, so he went to lay down for a half hr (which turned into just over 2 hours) and I stayed with the boys.  I was tired too, so I laid down to try to close my eyes for a few minutes while Emerson watched Beauty and the Beast and Parker played with his cars.  I looked up at one point and Emerson had fallen asleep sitting up!  He slept for about 30 minutes, but then Thom got up and it was time to get ready to go out to eat.  Emerson fussed a little about leaving until we told him there were french fries involved. LOL

We chose to eat at Ground Pat'i, a local burger place, because it was sure to have food the boys would eat and it was more of a "family" style place in case Emerson had a fit.  Parker was super hungry and hiscrying made Emerson start acting goofy (standing in the booth, poking Thom on the top of the head, giggling and making noises...all signs that a meltdown was coming), so Thom took him for a walk to the car to get some animal crackers for Parker to munch on while we waited for our food.  Food came.  All is good.  Emerson asked for a hamburger and fries; then he asked for black sprinkles (aka pepper...don't ask me where he got "black sprinkles" since we've always called it pepper. He also calls catsup "red dipping" although we've always said catsup).  Thom grabbed the pepper and sprinkled some on Em's fries.  Meltdown.  Emerson looked at me and his poor face just crumpled into tears...open mouth, tears flowing, snot coming out of the nose.  You could see, by the look in his eyes, that he was not in control in anymore.  It was heartwrenching to see and I have tears in my eyes right now thinking of his face.  He doesn't cry like that often--that my-heart-is-broken, sobbing-from-the-bottom-of-the-soul type of cry--and it breaks my heart every time it does happen.  Thom tried to make amends by offering to let Emerson put pepper on his fries or to blow off the pepper he had already put on, but it wasn't until he picked up all Emerson's fries and I transferred my un-peppered fries over to his plate that Emerson finally, and slowly, calmed down.  He was tired...we knew that and probably shouldn't have pushed him into going out to a place he hadn't been before where Parker was fussy, music was playing, lots of people were talking (although we were early enough that there were only a few full tables around us), and there were simply too many things bombarding his senses.  Luckily, the rest of the dinner went OK.

By the time we got home, it was almost Parker's bedtime.  Thom went to rock him to sleep while I let Emerson finish watching his Beauty and the Beast cartoon.  Thom went to bed, telling me to just bring Emerson into our bed instead of putting him down in his room because #1-Emerson would end up with us at some point during the night anyway, #2-I was tired and didn't need to try to sit in the chair by Emerson's room until he fell asleep as I normally do, and #3-I needed to get to bed early and the only way Thom could make me do that was if I went to bed when Emerson did (he knows me well...I would have been up typing blog posts!)  I told him I wasn't sure it would work, but agreed because I was tired and climbing into bed early sounded really, really good.

The movie was done about 8:40, but Emerson wanted to read a book and sleep in his own bed.  All the better, I thought.  Of course, after we finished the book, he decided he wanted to sleep with Mommy and Daddy in the Big Bed, so away we went.  As he laid down between us, he started his usual talking to himself and moving around.  Thom told him to be quiet and lay still.  Emerson didn't.  Thom repeated himself.  Emerson moved around more.  And because I knew Thom would get annoyed and do or say something that would make matters worse with Emerson, I too started telling Emerson he had to lay still and go to sleep. 

That's when the hitting started.  I had my eyes closed and, out of no where, Emerson punched me in the nose.  Thom saw it and tried to grab Emerson's hand.  Emerson laughed and punched me in the eye.  He was now sitting up and laughing.  His signature meltdown was fast approaching.  Once we reach the laughing and trying to hit or punch the face stage, it's too late to stop a meltdown.  Thom tried to restrain his arms and Emerson arched his back and yelled  little.  He kept saying "No" and as soon as Thom let him go, Emerson lunged at me and punched some part of my face...my eyes, my nose, my cheek.  We tried to talk calmly with just a few words and very clear directions...Stop Hitting, Lay Down, Take a Deep Breath, Don't Punch Mommy.  I told Thom hat Emerson needed to go back to his own room, but Thom disagreed and said that Emerson just needed to calm down and go to sleep because he tired.  I then said that since Emerson was only hitting me, I was going to remove myself from the situation. 

I sat on the couch while Thom tried to rock Emerson on the "safe spot" he had created for Em on the floor near our bathroom (I still don't quite understand what makes it "safe" other than it's close to our bed and close to the night light in the bathroom).  Eventually, Emerson said he had to go potty and he seemed much calmer afterwards, so I went back in to lay down with them.  Once again, Emerson started talking to himself and playing with Teddy Head (his comfort toy he's had since infancy) above his head.  Thom told him to be quiet, lay still and go to sleep.  This time I spoke up and told Thom that this was Emerson's bedtime routine...it was his way of calming himself and working through the day in preparation for sleep.  He does it every night.  I'll hear him whispering in his bed, I'll see shadows of his arms moving around as he lifts up Teddy Head and plays with him.  It's his normal routine that he needs.  Thom said he needed to learn to lay still.  Well, that wasn't going to work and, as if to prove it, Emerson punched me in the eye.

That was it.  I picked up Emerson and told Thom that I understood the theory behind having Emerson start out the night in our room, but it wasn't what he was used to and it was setting him off.  Off to Emerson's room we went.  I laid down with him and he was almost immediately calmer.  I laid next to him and let him talk as he needed, move as he needed.  After a while, he reached over, stroked my cheek and said, "I didn' mean to hit you, Mommy."  "I know you didn't, honey," was my response as the tears came to my eyes.  "I'm sorry for fighting you," he whispered as he snuggled close.  I put one arm under his head, bending it so my forearm went all along his face and my hand was on top of his head.  He pressed his back into my front, so I wrapped my other arm all the way around his torso and held him firmly against my body.  He was asleep within 5 minutes.  Makes me think again about the benefits a weighted blanket might have for him.

On Sunday, Emerson stayed home with Thom while Parker and I went grocery shopping.  I was in high spirits on the way home, with plans for an Arts & Crafts afternoon, but all that changed as soon as I walked through the door.  Emerson had been bathed and put into pajamas.  He had gone to the bathroom and come running out later without his pants on, hitting at the air with his arms and crying hard.  Thom went into the bathroom to find Emerson had gone poopy in the potty...and in his underwear and a couple places on the floor.  We're still not sure what happened exactly, but Emerson was very upset. 

Bowel movements have always been difficult for Emerson.  He waits until the last minute, which often causes accidents both at school and at home.  He also doesn't like to wipe, saying that the toilet paper hurts him.  It's a battle ground when we know he has to go poopy and he just won't.  We insist and try to make him, he refuses and starts to fight back.  He often puts off going pee until it's almost too late sometimes too.  I don't if it's a sensory issue--that his body is unable to "read" the senses telling him that he needs to go to the bathroom--or not.

As he sat on the couch watching cartoons, we could tell that Emerson looked very tired.  Several times, he reached over and started slapping Thom in the face and on the head.  The decision was made to take him into our room, put a video in and Thom would stay with him and take a nap with him.  It was quiet for a long time, and then there was a lot of noise and commotion.  Quiet, and then noise.  Finally, Thom came out shaking and in tears.  He said he just didn't know what to do anymore...didn't know how to handle him.  I looked past him and Emerson was laughing and jumping all over the bed.  I handed Parker to Thom and told him to put the little one to bed while I tried to get the big one to nap.  I carried Emerson--kicking and hitting-- into his room and shut the door. 

The next hour and a half...maybe closer to an hour and 45 minutes...were not much fun at all.  I was punched several times, directly in the eye, and more than once he told me he was going to poke my eyes out.  Once, he hit me in the eye hard enough to make tears come.  As he apologized and started to wipe my tears away, he stuck his finger in hard and said, as he laughed, that he was going to take it--my eye--out.  That is probably the hardest sentence I've had to type on this blog yet.  This behavior that we're suddenly seeing is not the Emerson we know and love.  I don't know where he came from, but it's only been maybe the last month that he has exhibited behavior like this and it's getting worse as time goes on.  It terrifies me.  I don't know what to do with this; I don't know how to handle him when he's like this.  It's as if Emerson is not there at all, as if he can't even hear us talking to him.

Anyway, I finally convinced him to lay under the beanbag chair (I was thinking again about that weighted blanket) by telling him it was a tent and that we were hiding from dinosaurs.  It seemed to be working...he was getting calmer, although he wanted to peak out and shoot at mean dinos.  And then Thom came in with the mylar balloon his parents had brought for the boys the day before.  Why he thought having a balloon in the room would help calm Emerson down I will never understand because all it did was make Emerson jump out from under the beanbag and want to play with the balloon.  It took forever, along with plenty of punching, kicking, biting and pinching, to get him calm again.  Finally...finally...he laid still next to me.  I think his body had just finally given up; he had no more energy.  Still, he wouldn't close his eyes.  He never does.  Even when he's tired and goes to bed without much fuss, he lays there with his eyes open until they close in sleep.  He tells me that he can't close them while he's trying to go to sleep.  "They have to just stay open, Mommy."

The rest of the day was not much different.  Lots of wild attitudes, hitting, being defiant.  We decided on no more cartoons for him.  Period.  But to allow him to watch his dinosaur videos for some quiet time.  He watched one tonight and was quite calm and went to bed without a lot of trouble.  Maybe dinosaurs are his safe zone, the place he can go that is familiar and comforting.  I'll work with that theory for a while and see if it gets us anywhere.

But this whole weekend has made me worried about what will happen tomorrow when he goes back to his day center.  On Friday, his teacher had written me a not that said, "Awful. Rude. Defiant. Deliberate Behavior"  When I asked the other teacher in his room what was meant by the note, she said she wasn't sure because she wasn't in attendance at the time, but Emerson had torn a poster off the wall and screamed quite loudly and a teacher from another class had to come in and remove him.  When I asked Emerson about his day--and it took quite a few questions in a round-about manner, but I've gotten fairly good at that!--, he said his teacher had gotten mad at him because he tore a picture on the bathroom door.  He did it because the other kids were being really loud and yelling "Me, Me, Me" during circle time (I guess to be picked for something) and it hurt his ears. 

The night before, Emerson had been awake from 2:30 until just after 5am, so I knew he was tired going into school that day.  I should have warned his teacher instead of just mentioning it to the co-director who doesn't relate much of anything you tell her to any of the teachers, so hat's my fault.  When he's tired like that, his sensory processing is even worse than usual.  And his auditory processing is so sensitive to begin with!  Emerson also told me that he was taken into the baby room.  Now, in a way this is good because it's much calmer and quieter in there (there aren't many babies and they don't cry very often), but it also made me mad because I know the woman they called to take him out often tells Emerson that she's going to put a diaper on him because he's acting like a baby.  I've mentioned this in passing to the director who, true to form, says that particular woman would never say that and Emerson is making it up.  When I said I've been present when she's said it to him on at least one occasion and, furthermore, the woman herself admits to saying it, the director changed the subject.  I could push my case, but I'm tired and broken down.

But the note on Friday from Emerson's teacher made me think of all the people in our lives who don't, or won't, understand Emerson's differences.  There is the one who told me that Emerson doesn't look or act autistic (I think along the lines of Rain Man), the one who said that they had been present when Emerson was around a lot of noise and it never affected his behavior for the negative (and this, to that person, was proof that there was nothing of truth in his having autism), the one who asked if we were going to continue to see our social worker so we could learn how to parent our children to make sure Parker didn't end up the same way, the one who said there were so many cases of autism because parents were trying to label the children with something instead of taking the blame for poor parenting skills, the one who said he had met my child and could tell that the psychologist and occupational therapist had no idea what they were talking about, another who claimed that all of Emerson's problems were the result of his grinding his teeth at night and that there had been studies done that proved it, the person who said we should put a rubber band around Emerson's wrist and pull it back and snap it whenever Emerson started to misbehave, this was the same person who told us to put a lock on the outside of Emerson's bedroom door to keep him in at night and teach him to sleep in his own bed, the one who said that if Emerson really is autistic then he needs to be put in a special class because he has no right to hold up other students and it's unfair to expect the teacher to have to deal with problems like that, the one who makes fun of the workshops we say we're going to attend, the one who says we're reading into things and making Emerson's behaviors fit a diagnosis so we can make excuses for him, and those are the ones I can remember at the moment.  Other comments have been made and most of these are from the same sources.  Of course, there was the couple next to us on Saturday night who gave us dirty looks when Emerson started crying over the pepper incident.  You could tell by the way they looked at us that they thought Emerson was a spoiled brat.  And I'm sure we'll encounter more people like that in the future.

It makes me very angry because I find myself making excuses for Emerson when I really want to tell them to quit being ignorant assholes and read up on the subject.  I haven't lived in very many places in my life...grew up in Catawba, WI; lived in LaCrosse, WI and Fountain City, WI and Winona, MN before moving south, but I was exposed to a wide variety of people from all over the country and from a lot of different walks of life during that time and I can tell you one thing:  I have never met more ignorant, prejudiced, narrow-minded, opinionated (and not in a good way) people than I have down here.  No, they're not all like that...but there sure seems to be a high concentration of them down here.

But, as discouraged as I get with people, I still am Blessed to have some truly wonderful people in my life.  My parents and sister, who never once voiced disbelief or were in denial over Emerson's diagnosis but who, on the other hand, have helped point out examples of things they noticed and had questioned that fit into the characteristics of autism.  My brother- and sister-in-law in Shreveport who always have encouraging things to say and who have offered to take both boys for a weekend so Thom and I can get away (something we have NEVER done. In fact, I can count on two hands the number of times we've been out on dates since Emerson was born...and the majority of those were for meetings or work functions!).  My sister-in-law and nephew in New Mexico who graciously offered their knowledge and experience any time we need it (my nephew has Aspergers).  My father- and mother-in-law who we can rely on to come down from Pineville (as they did on Saturday) to watch the boys so we can go take care of business.  And my mother-in-law paid me a wonderful compliment this Saturday when she said that, thanks to reading this blog, she felt more knowledgeable and better prepared for taking care of Emerson.  And my dear friend, Alicia, who is always here for me with an encouraging word, a shoulder to cry on and ear that will put up with all my complaining.  She is quite an amazing woman with 2 gorgeous daughters and an adorable son.  She does far more than I do, and I don't know she pulls it off. 

Last Monday when I was having a horrible day because of financial problems and a huge fight with Thom, Alicia happened to send me a very empowering, very uplifting e-mail and I want to share it with you:

Just wanted to say that you are a magnificent woman!!!!  When I think of what you are going through and when I read your blog posts about what you are doing for your family, I am in awe.  You are a STRONG woman.  You are an AMAZING mother.  You go above and beyond--and even to the ends of the earth if necessary--for your sons.  The last several months have been so overwhelming for you.  It's been one thing after another, and you just keep going.  You are weathering the storms.  You have persevered.  You have taken these....."wrenches"....that life has thrown at you, and you are taking them head-on.  You are determined......determined to make a better life for your son.  You are determined to ensure that Emerson has the best of everything he will need to get through life.  Nicole, you are an amazing mother!  You are learning everything you possibly can; you are absorbing it all.  You are doing better, I think, than most people would.  Better than me, that's for sure.

When you look in the mirror, remind yourself that you are the most loving, caring, strong mother your sons have.  You are providing them with everything they need....and more.  Please give yourself a break every so often.  And let Thom help you.  :)  You deserve a break.  Don't feel guilty for taking an hour to yourself.  To take a hot bubble bath by candlelight, with music blaring into your brain, a glass of wine, and a trashy Harlequin romance. (Ok, maybe not a Harlequin because seriously?  But I think you get the point.)  If you want to have yourself a good cry, I'm never far away. 

Strong, resilient, magnificent, loving, compassionate, smart, amazing.  You are all of those things and more.  I admire you so much.  It brings me to tears--even now--when I think of all that you are going through, and you just keep on going.  You an amazing mother, Nicole, and--like your sons--you deserve all the best.  You truly do.  Love you!!!!!

Forgive me, dear girl, for sharing this.  But it has helped me so much...more than you can ever know.  I have it printed out and it is kept on the inside of my binder where I can take it out and read it whenever I'm feeling low about things.  And each time, just as it did now when I read it again, it brings tears to my eyes.  Thank you for taking the time to write this to me.  I love you, chica!

I love all of you.  Whenever I come home from work and feel as if I don't have a support system and that there is no one around me who understands or is willing to try to understand, I remind myself that I have all of you...and I'm grateful.