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. 

IEP Bootcamp

Yesterday morning was our IEP Bootcamp.  It was held at the ASAC (Autism Society-Acadiana Chapter) and our presenter was Mylinda Elliott from Families Helping Families in Lake Charles.  Mylinda has 5 children, all of whom have a learning disability of one kind or another and 2 of whom are autistic--one on the low end of the spectrum (and I think she's non-verbal) and the other on the high end of the spectrum with Aspergers.  Just from listening to her talk, and I had already had a conversation on the phone with her prior to the Bootcamp, you can tell she is a real go-getter who won't take nonsense from anyone.  She really knows her stuff and would be a wonderful advocate to work with...had she been from the Lafayette branch of Families Helping Families.  Of course, I can still contact her with any questions or concerns.  I haven't met the Lafayette advocate yet, but I can only hope she is as strong-willed as Mylinda!

We were a smallish group, which was good because the room we were in was, shall we say, quite cozy.  Let me tell you, I was shocked by the number of parents who came in saying they had children 8, 9 or 10 years old with a learning disability of some kind (Down's Syndrome, Autism, and one woman had a daughter who had benign tumors that grow all over her body, including on her brain, poor thing!) and they all said the same thing...we just go in and listen to what they tell us they're putting on our IEP and then sign it because we figure the school is doing the best for our child. !!!!!!!!!  Frankly, I was shocked.  Here were people whose children have always had IEPs and the parents have never been involved other than to sign their names to them!  And it wasn't as if they were satisfied...they all had quite serious concerns about what was going on.  And it took them 4, 5, 6 years to do something about it?  To learn more?

Maybe they've never heard of a little something called the World Wide Web or a library.

I really don't get it.  These are your children.  They need extra help in school because of a learning disability.  And you're just going to trust the school system to know your children inside out and backwards?  You're going to trust that the school system knows what your goals are for your child and his or her future?  You're going to trust that the school system is naturally going to live up to the No Child Left Behind slogan?  Well,  you're a hell of a lot more trusting than I am then!

And maybe for me part of it is a trust issue.  I don't trust that someone else is going to do their job unless someone is behind them, paying attention and holding them accountable.  I don't trust the school system to find out everything they should to know about my child's needs unless I tell them.  And I'm going to tell them in writing and hand it to the appropriate person myself, so I know they've received it.  I'll even request a meeting so we can go over it together if I feel it's necessary.  I don't trust that anyone whom I request to send in paperwork is going to do it when they say they will, so I'll do a follow-up to see if it's done and I'm going to request a copy for my own records.  We've yet to even reach the IEP stage and I already have 3 binders with our relevant info and paperwork.

Maybe the other part for me is the need to educate myself.  I want to know how the system works.  I want to know my rights as a parent and my child's right as a student.  I want to know what the school system is supposed to be doing, what they have to do by law, and what they can do to ensure even more help for us should we need it.

I don't think this is odd...I think this is being a responsible parent.  And while I did not think poorly of these parents who are just now trying to educate themselves and do better for their children, I will admit to feeling sorry for them and their kids.  From the stories they told, it sounded as if the school system was not playing by the book and was getting off with doing as little as possible for these kids.  It's a real shame and just further proof in my mind that I have to go in knowing my rights and having all my ducks in a row.

Anyway, back to the IEP Bootcamp.

Can I just say...Wow, what a crapload of info!  I felt overwhelmed by it before because I really knew nothing whatsoever about IEPs; and now I feel a little more educated, still overwhelmed and a little bit afraid.  It just seems as if there is so much I'm going to need to know, so much preparation to be made, a lot of parental rights I need to read up on, and a lot of follow-up and "babysitting" that will need to be done afterward.  I've gotten all worked up about it and we haven't even received word from the Parent Child Center yet that Emerson qualifies for help! LOL

We were given a whole binder of info that I've yet to read through, but it's going on my master list of things to look up and learn about.  Mylinda made references to several laws, agencies and terms that I wrote down to look up later.  She talked about so many ifs, ands, buts and how-tos in regards to this whole process that my head is still spinning.  Part of me feels like a bunch of random tidbits was thrown at us and we now have to go straighten them ll out and try to make sense of them.  There were enough of us that it was impossible for her to answer all the individual questions, and each time one was asked and we were put a little off-course by her brief explanations, I got more confused.  I'm the type of learner who needs everything put forth in a clear, concise way with time for questions after.  All the interruptions made it difficult for me, so I'm grateful for the binder because almost everything I'll need to know is in there.  I also learned that Families Helping Families has online workshops!  (I also found some online lectures from Dr. James Ball when I visited his site, so there's another source of info!)

It's beginning to look like I should take a week off of work just to get somewhat caught up on the learning I need to do!

Dr. James Ball, Ed.D., BCBA-D

Last night, Thom and I attended our first Autism related presentation.  It was hosted by the Autism Society-Acadiana Chapter (ASAC) and featured Dr. James Ball, Ed.D., BCBA-D as the speaker. (For those that aren't up on this kind of thing--Ed.D. is Doctor of Education, BCBA-D is Board Certified Behavior Analyst Doctorate -- I had to look up that last one!).

The presentation was titled "Techniques for Systematic Teaching and Reducing Behavior Challenges in Students with an Autism Spectrum Disorder - A Positive Behavioral Support Approach".  It was geared more towards teachers although there was plenty of info for parents to use at home as well.  Here are the goal and objectives of the presentation as laid forth by ASAC:

Goal: Understanding systematic techniques for teaching students on the autism spectrum

Objectives:

• Participants will be able to identify 3 reinforcement techniques to assist an individual on the autism spectrum in the learning process
• Participants will be able to implement 3 specific teaching techniques that will assist an individual on the autism spectrum in the learning process
• Participants will be able to design an individualized teaching program that will assist an individual on the autism spectrum in the learning process
• Participants will be able to design an individualized behavior plan program that will assist an individual on the autism spectrum in reducing problem behavior through a Positive Behavior Support Plan.  

 Dr. Jim was a fabulous speaker.  He has been working in the field for around 25 years and has worked with the whole gamut--from 0-3 years, young school age children, tweens, teens, he currently has 3 he works with who are in college, and his oldest autistic client is now 65!  He has dealt with all ranges of abilities from non-verbal children, including one he has seen since he was 3 and is now 19 and still is unable to communicate verbally, to high-functioning children, some of whom are now in the workforce, married and starting families of their own.  He has lectured nationally and internationally, published in a variety of areas from early intervention to trauma, and has served on a plethora of boards and panels in autism related organizations, and is currently the Chair of the Autism Society of America Board of Directors.  His list of oragnizational work is impressive. 

He also happens to be president and CEO of JB Autism Consulting, which offers private consulting to organizations, families and schools in the areas of behavior, classroom management, curriculum development, social skills development and parent training, to name just a few.  His philosophy, as set forth on his website, is 

It's all about people and relationships...

In order to be effective with any person, on the spectrum or not, you must first treat them with respect.  Show them you are there to help, not to change who they are.  Let them see and understand their strengths while shaping their challenges, which may be holding them back from being successful.

No matter whom it is I am working with, a person with autism, a family, an administrator, or a staff person, the bottom line is: It's all about team work, and getting everyone on the same page.  Making sure every one is headed in the right direction on the same track.

...and, follow up is always the KEY

I've added his book, Early Intervention & Autism: Real-Life Questions, Real-Life Answers, to my Wish List and will look at some of the articles he's written for Autism Aspeger's Digest.

Obviously from the title of his presentation, Dr. Jim talked a lot about behavior and stressed the importance of getting to the cause of the behavior and pointed out the common mistake of just treating the symptoms.  Often, if you're just treating the symptom and the root cause is not being addressed, all you're going to accomplish is stopping one negative behavior and transferring it to another.  Example: Little Toby leaves his seat and goes up to the teacher when she's trying to lecture during classtime.  He gets punished for this by having to sit in time out.  He stops getting out of his seat, but now he is knocking things off his desk instead.  The original negative behavior has stopped, but it has transferred to another negative behavior.  The teacher did not look at why Toby was doing what he was doing...she was looking for a way to stop the behavior she didn't like--getting up from his desk during classtime.  If she had looked at the cause of his behavior--Toby was seeking attention--she could have redirected him into a less disruptive behavior such as raising his hand when he needed attention.  This still might not be ideal in a classroom situation, but it is less disruptive and can be built on from there.

[Side Note:  Without knowing it, Thom and I had started to do this with Emerson.  When Thom and I are talking, Emerson will frequesntly come up and demand our attention.  Thom's solution was to stop our conversation and turn to Emerson; my solution was to ignore Emerson and continue speaking or to tell him, "Go play. Mommy and Daddy are busy."  Both were ineffective and the wrong way to handle the situation.  Thom was teaching Emerson that it was socoially acceptable to come up, interrupt a conversation and expect undivided attention; I was teaching him that what he had to say didn't matter and that we were too busy for him.  During our session with Jessica, Emerson came up and started talking.  Jessica turned to him and said, "Emerson, when Mommy's talking to someone and you want to tell her something, maybe you can say, May I have a turn talking, Mommy?"  So, when I went home that night, I told Thom we were going to start trying it.  Now, when we're talking, Emerson comes up and says, "Can I have a turn talking, Mommy/Daddy?" and we tell him, "Yes" or "Wait until Mommy/Daddy is done and then you can have your turn" and he will stand and wait until we've finished our sentence at least and then we'll turn to him and say, "What did you want to tell us, honey?"  It's a step in the right direction.  He's still coming up and interrupting us, but he no longer expects us to stop and pay attention to just him.  He'll wait until we've finished the point we were making/sentence we were in the middle of uttering or whatever, before he speaks.  We'll slowly stretch out the time he has to wait for his turn and, eventually, we hope that he won't interrupt at all, but will come up and wait for us to finish...knowing that he will get his turn, he just has to wait.]

Dr. Ball listed 4 Functions of Behavior:  Communication, Self-stimulation, Attention Seeking, Escape/Avoidance.  All behavior can be classified into one of these areas.  Our job as parents and educators is to define the behavior as specifically as possible, collect data, do a Functional Behavioral Assessment, establish a hypothesis, test that hypothesis, and review the data for effectiveness.  These are the Behavioral Treatment Guidelines that Dr. Ball uses.  (I'm not going in depth into any of this...just giving you a brief overview of what he discussed) 

It is important to keep in mind that there are no quick fixes when trying to change negative behavior.  Especially with autistic kids when routines are key, it can take several months to over a year to change some behaviors.  It is also important to stop yourself from kicking back and relaxing if you find something that works; these kids are ever-changing...you need to stay 2 to 3 steps ahead of them to ensure the program will continue to work.  you need to alter it as they grow and change.

I'm really glad we were able to go listen to Dr. Jim.  It's a shame we were unable to stay after to meet some of the other parents, some of the teachers present, and speak with Dr. Ball himself.  I did meet Vickie, however, who is the Admin Asst at the ASAC and whom I've talked with on the phone several times.  She is very bubbly and nice, and I can't wait to get more involved with the local chapter of the Autism Society!

So, What Exactly IS ASD?? (Part 3-Diagnosis)

Here we are with the third installment on defining--or attempting to define--ASD.  If you missed them, you can always go back and read (Part 1-Definition & Characteristics) and/or (Part 2-Classifications & Causes).  I think I was going to discuss Diagnosis and Management in this post, and maybe overview Causes again.  Let's dig right in, shall we?

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Diagnosis is based on behavior.  It can be behavior observed by a trained clinician or through interviews by parents or other caregivers who have observed the child.  There are several diagnostic instruments in use, which I will discuss briefly a little later on.

Autism is defined in the DSM (Diagnostic and Statistical Manual), a publication by the American Psychiatric Association that sets forth standard criteria for the classification of mental disorders.  The current edition, DSM-IV-TR (Text Revision of the DSM Fourth Edition) was published in 2000.  The next edition, DSM-V, is not due for publication until May of 2013.  Autism falls under the prototype Pervasive Developmental Disorders.  Below are the criteria that must be met for a positive diagnosis of Autism:

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(b) failure to develop peer relationships appropriate to developmental level

(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication, as manifested by at least one of the following:

(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

(c) stereotyped and repetitive use of language or idiosyncratic language

(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities as manifested by at least one of the following:

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(b) apparently inflexible adherence to specific, nonfunctional routines or rituals

(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole-body movements)

(d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett's disorder or childhood disintegrative disorder.

And for a diagnosis of Asperger's Syndrome (whose major difference is there is no major delay in language development or in curiosity about their environment):

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia

Diagnosis can be made by using a number of different evaluative tools in the form of questionnaires, which might be answered by parents, caregivers or a trained evaluator, all of whom base the answers on the observations made and interactions with the child being evaluated.  The most popular are the ADI-R (Autism Diagnostic Interview-Revised), ADOS (Autism Diagnostic Observation Schedule), and CARS (Childhood Autism Rating Scale).  As part of Emerson's evaluation, we also filled out the GARS (Gilliam Autism Rating Scale) form.  Descriptions of each are below.

"A pediatrician commonly performs a preliminary investigation by taking developmental history and physically examining the child. If warranted, diagnosis and evaluations are conducted with help from ASD specialists, observing and assessing cognitive, communication, family, and other factors using standardized tools, and taking into account any associated medical conditions.  A pediatric neuropsychologist is often asked to assess behavior and cognitive skills, both to aid diagnosis and to help recommend educational interventions." (Wikipedia)

[Side Note:  The pediatricians we know if down here in Louisiana would not do an ASD assessment.  We called our local Autism Society chapter and spoke to several people "in the know" and asked for referrals to places who could evaluate a child Emerson's age.  No one has ever mentioned to me anything about a neuropsychologist getting involved.  In fact, half the stuff I'm reading as I learn has not been mentioned to me as far as further evaluations, treatment and therapy ideas, etc.  It makes me wonder if I need to be calling around to more places!  Lesson learned: Do your research and get a second opinion or push for more advice/evaluations if you feel that something is missing in your initial eval.]

Diagnostic Tools (Wikipedia)

ADI-R (Autism Diagnostic Interview-Revised): a structured interview conducted with the parents of individuals who have been referred for the evaluation of possible autism or autism spectrum disorders. The interview, used by researchers and clinicians for decades, can be used for diagnostic purposes for anyone with a mental age of at least 18 months and measures behavior in the areas of reciprocal social interaction, communication and language, and patterns of behavior. 

The interview covers the referred individual’s full developmental history, is usually conducted in an office, home or other quiet setting by a psychiatrist or other trained and licensed professional, and generally takes one to two hours. The caregivers are asked 93 questions, spanning the three main behavioral areas, about either the individual’s current behavior or behavior at a certain point in time. The interview is divided into five sections: opening questions, communication questions, social development and play questions, repetitive and restricted behavior questions, and questions about general behavior problems. Because the ADI-R is an investigator-based interview, the questions are very open-ended and the investigator is able to obtain all of the information required to determine a valid rating for each behavior. For this reason, parents and caretakers usually feel very comfortable when taking part in this interview because what they have to say about their children is valued by the interviewer. Also, taking part in this interview helps parents obtain a better understanding of Autism Spectrum Disorder and the factors that lead to a diagnosis.

The first section of the interview is used to assess the quality of social interaction and includes questions about emotional sharing, offering and seeking comfort, social smiling, and responding to other children. The communication and language behavioral section investigates stereotyped utterances, pronoun reversal, and social usage of language. Stereotyped utterances are the few words or sounds that the individual uses and repeats most often. The restricted and repetitive behaviors section includes questions about unusual preoccupations, hand and finger mannerisms, and unusual sensory interests. Finally, the assessment contains questions about behaviors such as self-injury, aggression, and over activity which would help in developing treatment plans.

Autism Diagnostic Observation Schedule (ADOS):  an instrument for diagnosing and assessing Autism. The protocol consists of a series of structured and semi-structured tasks that involve social interaction between the examiner and the subject. The examiner observes and identifies segments of the subject's behavior and assigns these to predetermined observational categories. Categorized observations are subsequently combined to produce quantitative scores for analysis. Research-determined cut-offs identify the potential diagnosis of autism or related autism spectrum disorders, allowing a standardized assessment of autistic symptoms.

The ADOS generally takes from 30 to 60 minutes to administer. During this time the examiner provides a series of opportunities for the subject to show social and communication behaviors relevant to the diagnosis of autism.  Each subject is administered activities from just one of the four modules. The selection of an appropriate module is based on the developmental and language level of the referred individual. The only developmental level not served by the ADOS is that for adolescents and adults who are nonverbal.

Childhood Autism Rating Scale (CARS):  a behavior rating scale intended to help diagnose autism. CARS was designed to help differentiate children with autism from those with other developmental delays, such as mental retardation.  CARS is considered the gold standard in the field.

The CARS evaluation criteria is a diagnostic assessment method that rates children on a scale from one to four for various criteria, ranging from normal to severe, and yields a composite score ranging from non-autistic to mildly autistic, moderately autistic, or severely autistic. The scale is used to observe and subjectively rate fifteen items--relationship to people, imitation, emotional response, body use, object use, adaptation to change, visual response, listening response, taste-smell-touch response and use, fear and nervousness, verbal communication, non-verbal communication, activity level, level and consistency of intellectual response, and general impressions.
This scale can be completed by a clinician or teacher or parent, based on subjective observations of the child's behavior.

Gilliam Autism Rating Scale (GARS): a norm-referenced instrument that assists teachers, parents, and clinicians in identifying and diagnosing autism in individuals aged 3 through 22 and in estimating the severity of the disorder. Using objective, frequency-based ratings, the GARS can be individually administered in 5 to 10 minutes. The assessment consists of 42 clearly stated items describing the characteristic behaviors of persons with autism. The items are grouped into three subscales: Stereotyped Behaviors, Communication, Social Interaction.

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I hope this has helped some of you understand how a diagnosis is reached and the methods used to make a diagnosis.  For Emerson, we filled out the CARS and GARS forms.  Apparently, as we found out later, we were supposed to fill out one and daycare was supposed to fill out the other.  When we picked up the forms from the secretary, she called over someone else to explain to us what we were supposed to do, and that person told us to fill out both.  I think Jessica was surprised when I told her we filled out both as she assumed Pam at the daycare completed one.  This also explains why Pam kept telling me that Jessica never contacted her...they played phone tag for a while, but once Jessica received the evaluations, she didn't need to speak to Pam any more (I'm guessing) since she assumed Pam had done her part by filling out the questionnaire!  Talk about a confused state for all of us! LOL

This post turned out much longer than anticipated (big surprise), so I will continue with a Part 4 to finish up.  I've also gone back and added descriptors to each part so readers know which each of the "parts" covers.

Plan for Part 4--Management (or Treatment/Therapy Options) and possible an overview of past posts.

Charts

It's the end of another weekend.  Ours started out fabulous--Saturday was one of the best days we've had as a family in a very long time.  We actually interacted as an entire family, and everyone pretty much got along.  That does not happen very often in this house. 

Sunday, however, was another story.  It had it's high points, but it's low points were very low.  Emerson has been having problems with violent behavior lately and we're not sure what's going on.  It really started manifesting itself regularly--as opposed to the once in a blue moon we had been seeing of it--last weekend.  When he gets frustrated or upset or overstimulated (we're guessing that this is what's happening when he starts acting out physically, anyway), he's been laughing, acting silly and then kicking and slapping us.  When he really gets going, it changes to punches,biting and even choking.  I can' remember how many times today he slapped us, punched us in the face or stomach or kicked us.  It's gotten to the point that we're loathe to leave him alone when he's playing with Parker.  We used to let them play while we did something in the next room, since they tend to run in and out of whatever room Thom and I are in anyway, but last weekend Emerson bit Parker while pretending to be a carnivorous dinosaur.  He has also started shoving Parker, quite hard, when he doesn't want him in his bedroom. 

We're not sure what's going on with Emerson or why he's suddenly acting this way, but I did create a "Calm Down" area for him in his room where he needs to go whenever he starts acting that way.  It's just a bean bag in front of his bookshelves at the end of his bed, but he can go there whenever he feels the need (or when we send him there) and close the door so no one bothers him.  After he takes some deep breaths (which we've been practicing) and feels calmer, he can come back out a join us.  It's his safe place.  He went their twice on Sunday--after we sent him there--and both times he came out saying he felt better...and was like a whole different child--calm, quiet and no longer acting up.  It seems to have worked on those occasions, at least, but I'm looking forward to Thursdays ABA (Applied Behavior Analysis)workshop.

But that's not why I'm posting tonight.  I wanted to share Emerson's Routine & Reward Charts with you.  I designed them at home and thn brought them in to work for Stephen to print out for me.  He put the 2 charts on Coreplast for me (24"x18" corrugated plastic--what you say yard signs made out of) and laminated all my little pieces for me!  Thanks Stephen!  They weren't quite thick enough for repeated use, so I cut them out, put double-sided tape on the backs, taped them to cardstock and then cut them out again.  A bit of a job considering there were over 250 pieces, but well worth the effort.

First up is his reward chart.  He gets stickers for getting dressed by himself (including shoes), playing quietly during nap time, putting on his pajamas by himself, brushing his own teeth, and picking up his toys without being told.  But he can lose stickers if he hits, bites, kicks or terrorizes the cats.  Once he gets 5 stickers across, he can choose a little treat--mini marshmallows, Pez, gummy bears or a sticker to wear to school.  After filling up all 25 spaces, he gets to choose a big treat--watching any cartoon he wants (even on a school night), watching dinosaur videos on the computer, receive a small dinosaur figurine (my co-worker bought us 3 bags full of little dino figurines, so we're stocked for a while), or go to the bookstore for a treat and a new book.  Here it is:

I ran out of time, so none of these have Velcro yet, but that's how I plan to attach everything.  I have a 20ft roll of Velcro just waiting to be cut!

We're not using real stickers.  Since he's dino crazy, I went online and found a dinosaur store that sold a bunch of figurines and I picked out 25 that he was familiar with.  I added their names and printed them out on circles:

He will be able to choose which one he wants to place on his reward chart.  Here is how it will look all filled in:

Next up is his Routine Chart.  While transitions are hard for him, our daily routine from week to week is pretty much the same and I'm not so sure he really needs this.  However, it will help him get ready for any changes we will have, and it will be a good way to help him learn the days and months as well as keep track of the passing of time.  I did the days of the week in one color and the weekends in a different color.

 I did the months of the year, the days of the week and the numbers 1-31:

 And I did as many different activities as I could think of possibly needing. 

 I forgot the library...and something else that I've already forgotten again!  But I also want to do a picture for each holiday to use with the chart, as well as  generic something--maybe an arrow--to designate which day we're on.

Here's an example of what next weeks schedule would look like (provided I had the Velcro in place so we could actually use it! LOL)

I laid it our like a calendar, but I'm now trying to decide if the Sunday should represent the Sunday from the same weekend as the Saturday we have scheduled--and then we'd do the schedule for the following week on Sunday night) or if we should do the scheduling on Saturday night, in which case the Sunday would be the day following the Saturday we do the scheduling.  Not sure yet.

Hopefully, I'll get the Velcro cut to size and applied to all the pieces so we can begin using them both.  My boss saw these after they were printed and said I should market them! LOL  Might not be a bad idea...maybe I could make a few bucks to put towards Emerson's therapy!

Until next time, my friends....



Overwhelmed and Overwhelming

I feel as if I eat, sleep and breathe autism.  And lately, I guess, that's exactly what I've been doing.  Ever since Emerson's diagnosis Emerson was removed from Sts. Peter & Paul, I have been worrying about him, wondering about the future, dwelling on the challenges to come, frantically searching for answers, and pestering anyone I've ever met to ask for help.  Since his autism diagnosis on Dec. 20, I have searched through websites, scoured the bookstores, picked apart people's brains, and read a few books--with many more on my shelf waiting for their turn to be read.  And now, after the preliminary report from the occupational therapist, I feel even more overwhelmed.

[Side Note: I am not prepared to talk about the report from the OT yet, so don't ask.  She has a few more areas to test, but was able to get me a rough report for my meeting with the school board yesterday.  Let's just say it's more discouraging news piled on top of our existing discouraging news and leave it at that, OK?  When I've come to terms with it, I'll talk about it!]

It's overwhelming.

Even though I was expecting Emerson's diagnosis from Aucoin & Associates to come back as autistic, it's still a shocker...I don't care who you are.  It's not what you want to hear, what you hope to hear.  Frankly, you'd like someone to wake you up and tell you it's all a dream, or have a TV crew jump out at you and tell you that it was just a prank.  Instead, it has become your life and all those dreams for your child, your hopes for their future...well, they don't necessarily go away, but they do change. 

I no longer dream that he'll be able to read simple books by the time he reaches Kindergarten, I hope that he'll be able to be mainstreamed with as little help as necessary.  I don't dream about a big vacation at Disney World or an all day trip to an amusement park, I hope that our next birthday party doesn't involve tears, screaming, hitting, kicking or biting when we try to leave after he becomes overstimulated.  I don't dream of the day he'll bring home someone he really cares about to meet his parents, I just hope he'll be able to form real friendships...not just calling someone a friend because they happen to sit next to each other in class. 

The way you do things changes as well.  Instead of telling him in the morning that instead of going to little school (which is what he calls his day center) we're going to the dentist, I start talking about it a day or two in advance so Emerson has time to process it all.  Instead of taking our usual flight with two layovers and spending the majority of our day in airports and on planes, for our next flight home to Wisconsin we'll make the 2-hr drive to New Orleans so we can take a direct flight into the Twin Cities and then a 3-hr car ride to my parents' house (this seems more extreme as far as total travel time, but I don't have to deal with a possible meltdown in an airport during a layover or on a plane due to over stimulation from all the noise and commotion. Car rides mean we can make it quiet for him and we can stop as needed should he need a break).

It's overwhelming. 

It overwhelms me at unexpected moments, like today at work when I was in the back making my lunch.  I was thinking about how good my tomato soup was going to taste when, out of nowhere, a wave of utter helplessness swept me up and carried me off to the point of tears.  It happens frequently.... When I pick up Emerson from daycare and he proudly shows me the drawings he made--so simplistic compared to his classmates; when I'm putting him to bed at night and kiss his forehead and he tells me I hurt him; when I ask him to take off his pajama top so we can put his school shirt on and he's too busy reciting a book from memory to focus on what I'm saying and he ends up pulling down his pants and underwear instead; when we're out in public and he starts acting inappropriately and people look at us strangely; when I type something on this blog and I realize that I can never put into words exactly how I feel...that all words pale in comparison to the raw emotion; when I try to educate people and it hits me how little I know despite all my reading and how much I want to educate everyone who comes in contact with my son.

It's overwhelming.

And faced with our new challenges with the OT business...I don't even want to think about it.  What I do want to do is cry.  I want to sit down and sob for my little boy and for all the challenges he's going to face in life, for the judgements people have and will make, for the hopes and dreams I had for him which may not come true.  I want to sit on my pity-pot and feel sorry for myself.  And when I think of all the many, many people out there who face a lot more difficult challenges than those we face, I feel guilty.  And feeling guilty doesn't help matters because then I try to do more and I don't ask for help from my husband or anyone else; I don't cry on any one's shoulder...I keep it all bottled up instead. 

And I feel overwhelmed.

I'm trying to read as much as I can on the various subjects that relate to Emerson, but I've only actually gotten through 3 books with 5 or 6 more sitting on my shelf waiting for me to hurry up and read all ready!  (Keep your eyes open to changes made to the left where I will soon have two lists...a list with the books I've read so far and a list of the books I have that are waiting to be read.  I'll update both lists as their statuses change and as I acquire new books through my own searching or others' referral.)  I'm trying to search as many websites as I can find because so many offer a little different info than another might or might have it worded a bit different; the stores might offer different products or different ideas/activities.  (To the right are links to websites on the areas that concern Emerson--websites Jennifer suggested or ones that I found on my own through web searches or book resource guides.  Also listed are sites that offer tips and techniques on dealing with certain areas, stores that offer special needs products, and a list of what I refer to as "People In The Know"...people either on the spectrum themselves or specialists in the field. These will change as I find new ones and when I "reveal" the diagnosis from the OT.)  I'm contacting local autism societies, joining their member and mailing lists, acquiring calendar dates for upcoming workshops--two of which Thom and I are already scheduled to take, and finding about when support groups meet and whether or not play group or social skills groups have been formed for his age range. 

Upon a suggestion of Jessica's, I'm creating a Routine Chart and a Reward Chart to start using with Emerson...special ones that will be unique to him and him alone.  This involves planning the charts and creating appropriate rewards, what he will receive reward stickers for accomplishing, creating images to make his reusable "stickers", deciding what kind of routine chart would best suit him, finding images to cover the various categories, coming up with a workable design...not to mention actually making them both.  LOL  We're searching through organizations in the area to get him involved in activities we think he is capable of doing and will enjoy (one we found is like a soccer club, but they don't actually play any matches.  They learn the skills needed for soccer, but basically just go out and have fun.  We're signing up for that one this weekend.)  I'm trying to write on this blog as frequently as I can so I can define, discuss, and inform about as much as I possibly can--and do it in a timely manner so everyone has as much info they need to understand references I make or what I'm talking about as we go along...all without overwhelming my readers.

It's overwhelming.

Jennifer has written to me:  At some point, it will get easier.  You are in the initial learning phase and figuring out what services Emerson needs and where to get them.  Once you get through that you can start to get into a "normal" routine....  And Jessica has said, in reference to all the reading and researching I'm doing:  It's your coping mechanism.  It's how you're dealing.  They're both right, of course.  Learning is my coping mechanism and things will get easier.

 

I have said it before and I'll say it again:  Knowledge is Power.  By reading, researching, and learning I don't feel quite as hopeless...or as helpless.  I feel like I'm doing something to help Emerson.  Maybe it's really just a lot of busy work...especially the Routine and Reward Charts.  I mean, does he really need something so elaborate??  Maybe it's my way of avoiding the sad feelings that creep up on me when I'm not keeping busy with something.  I do have trouble with depression, after all, and the last thing I need is my own issues popping up when I need to focus on him.  Maybe I think that I'll become an expert and will make Emerson's life, and therefore our lives, a lot easier. And, really, isn't this every parent's hope when they have a special needs child?

 

But will everything I'm doing make a difference?  And why do I feel as if I have to do it all now?  Why do I think it has to be done immediately or our world will crumble apart?  Does it make a difference if I can't define all the terms right away to everyone?  Can't they Google something themselves if they're unsure of what I'm referring to or if they want to learn more than the info I'm providing?  Why do I feel responsible for presenting all the information out there that does or might relate to Emerson?  Why do I think I need to stay up until 11pm or later each and every night reading or writing or planning?  Will I miss something vital if I'm in bed by 10pm...or even 9:30pm?  Why do I feel the need to be at each and every appointment, and why can't I trust Thom to take some of that responsibility off my shoulders?  Am I that much of a control freak?  Or just that insecure in feeling that I'm not doing a good job as a mother if I'm not the one to take him to each visit?

 

I feel overwhelmed.

 

I'm running myself ragged, and I'm the only one to blame because I can't let myself--or make myself--slow down.  For once I agree with my husband...I'm trying to do too much at once.  But how can I stop?  The few times I have tried to get to bed early, I lay there wide awake thinking about what I could be doing, what I think I should be doing, and I feel frantic; I think about Emerson's once-upon-a-future and his might-possibly-be-future, and I feel like crying; I think about Holly (whom I will introduce you to soon...Hi Holly! *waving with both hands*), the posts I've read on her wonderful blog--so many of which I want to talk about here--and what an amazing person she is, and I feel inadequate; I think about Suzy (Hi Suzy! I still owe you an e-mail)  who reached out to me with questions and concerns of her own, and I feel the need to provide even more info to help her find a direction in which to seek help; I think about friends and family and how they don't have to deal with what we're dealing with but might have other problems, some even more difficult, and I feel as if I don't have the right to feel sorry for myself or the right to complain; I think about the school system and how unwilling they seem to help and how difficult I've been told the Lafayette Parish School System is to deal with, and I feel angry; I think of the huge amounts of money we're going to have to try to come up with in order to pay for Emerson's therapy, and I feel incredibly afraid; I think about my preoccupation with Emerson's issues, wondering if I'm neglecting Parker in some way, and I feel very guilty; I think about all that is yet to come, all that I still don't know about, the uncertainty of what the future holds for us, and I feel scared; I think about the therapy, the training, the extra attention and needs Emerson will have and, while I would do anything for this little boy, I suddenly feel very weary.   

 

It's overwhelming.

 

But I can only be who I am, and this is who I am today:  a mother who worries over her both her children's futures, a mommy who wants to help them as much as she can with whatever she can, a life-long scholar with a hunger for knowledge that is never quenched, a control freak who needs to know the who what when where and how, a perfectionist who has to be tip-top or wallows in the depths of failure, a sharer of information with a deep need to provide others with knowledge and understanding, a worrier and a fretter who freaks out easily about the little things but can usually take the big things in stride, a woman who is going to keep trudging along even if it means wearing herself out because she needs to provide her sons with the best futures possible.  

So, What Exactly IS ASD?? (Part 2-Classifications & Causes)

I had meant to write this up and have it posted by the evening of the 16th, but we had a rough weekend and it just didn't happen.  I'm learning to accept that sometimes plans will fall through, sometimes I have to change what I had in mind to accomplish for the day, and it's not a big deal.  Things can wait.  There's precious little that HAS to be done when planned...things like doctor appointments and bill paying.  I hope this is a lesson that my husband can learn soon because he still gets upset if the weekend routine gets a little messed up.  Like on Sunday when we didn't get home from running errands until almost nap time.  It messed up his idea of our routine.  It didn't help that I forgot my cell phone at home and Thom is the worrying kind!

Anyway, back to my ASD definition.  I hope you're all ready for another installment!  Please keep in mind my disclaimer: 

I am not nor do I pretend to be an expert on ASD, SPD or anything else for that matter!  The info I share with you here is from web sources and/or from various books that I have read or am currently reading.  If you are in one of the fields I discuss and you notice that I have presented wrong information, please contact me so I can correct it. The last thing I want to do is pass on faulty info.  If you have a child and you recognize some of these symptoms in him or her, please don't assume that s/he is on the spectrum...use this info to take your own notes on your child and seek a professional to provide an evaluation.  Visit my links on the right hand side to learn more on your own.

That being said, I think we were going to talk about the Classifications and presumed Causes, weren't we?  let's get started!

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This info is being taken primarily from Wikipedia with a few of my own notes from different books inserted here and there.  If you didn't read (Part 1-Definition & Characteristics), of So, What Exactly IS ASD?? you can find it here.

There are 5 forms of ASD: Autism, Asperger's Syndrome, Pervasive Development Disorder Not Otherwise Specified (PDD-NOS), Rett Syndrome, and Child Disintegrative Disorder.  Autism forms the core of these disorders and all the rest have similarities in traits with Autism.  Asperger's is the most closely related in both signs and likely causes, with the most noticeable difference being no significant language delay. [Side Note: As Emerson definitely did not have any language delay, quite the opposite, I believe he probably would be classified as having Asperger's.]  PDD-NOS is diagnosed when the criteria are not met for a more specific disorder.  Rett Syndrome affects girls almost exclusively with the most noticeable traits being small hands and feet, repetitive hand movements such as the wringing of hands, and typically have no verbal skills.  Child Disintegrative Disorder is rare and is evidenced by a late onset in developmental delays in the areas of language, social function, and motor skills.

From Wikipedia:

The manifestations of autism cover a wide spectrum, ranging from individuals with severe impairments—who may be silent, mentally disabled, and locked into hand flapping and rocking—to high functioning individuals who may have active but distinctly odd social approaches, narrowly focused interests, and verbose, pedantic communication.  Because the behavior spectrum is continuous, boundaries between diagnostic categories are necessarily somewhat arbitrary. Sometimes the syndrome is divided into low-, medium- or high-functioning autism (LFA, MFA, and HFA), based on IQ thresholds, or on how much support the individual requires in daily life; these subdivisions are not standardized and are controversial.

With newer technologies in the field of brain scans, it has been proposed recently that ASD cases be classified using genetics as well as behavior characteristics.  Talk about no two being alike...think of how many classifications and subtle differences could occur!  This classification might be quite helpful, however, in eventually identifying a cause for at least some of the ASD cases.

The classification of autism, as you can see, can be very confusing.  Identifying a cause has been affected by this overlapping of classifications and blurred boundary lines because of the "inability to identify biologically meaningful subpopulations"  as well as by the "traditional boundaries between the disciplines of psychiatry, psychology, neurology and pediatrics."  In other words, we can't all get on the same page with the same goal in mind in order to seek out answers.  Instead of pooling resources, it seems the each profession has its own sets of beliefs and ideas, researching what they feel to be the most likely cause.  This is how I understand it, anyway, from various tidbits I've read here and there about how parents and professionals alike tend to form a belief as to cause (genetic, vaccination history, food and diet, whatever) and spend their time, energy and resources trying to prove themselves right and everyone else wrong instead of coming together for the greater good.  I read somewhere recently--and forgive me for not remembering where, but I read so much these days!--that ASD is the only childhood disease that doesn't have a "united front."  What a shame!  Think of how much good could be achieved if we could agree to no disagree and, instead, search together keeping an open mind about causes behind what some call a world wide epidemic.

So what about these presumed causes anyway?  What's that all about?  Well, this is where I know about as much as the next person...which is very little.  I really haven't gotten into that whole section yet, so bear with me as I give a brief overview.  I'm sure I'll have more to say on the subject later on.  Copying straight from Wikipedia:

It has long been presumed that there is a common cause at the genetic, cognitive, and neural levels for autism's characteristic triad of symptoms.  However, there is increasing suspicion that autism is instead a complex disorder whose core aspects have distinct causes that often co-occur.  Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether ASD is explained more by rare mutations with major effects, or by rare multigene interactions of common genetic variants....However, most of the mutations that increase autism risk have not been identified. Typically, autism cannot be traced to a single-gene mutation or to a single chromosome abnormality, and none of the genetic syndromes associated with ASDs have been shown to selectively cause ASD....The large number of autistic individuals with unaffected family members may result from copy number variations—spontaneous deletions or duplications in genetic material during meiosis.  Hence, a substantial fraction of autism cases may be traceable to genetic causes that are highly heritable but not inherited: that is, the mutation that causes the autism is not present in the parental genome.

Several lines of evidence point to synaptic dysfunction as a cause of autism.  Some rare mutations may lead to autism by disrupting some synaptic pathways, such as those involved with cell adhesion.  Gene replacement studies in mice suggest that autistic symptoms are closely related to later developmental steps that depend on activity in synapses and on activity-dependent changes....

Although evidence for other environmental causes is anecdotal and has not been confirmed by reliable studies, extensive searches are underway.  Environmental factors that have been claimed to contribute to or exacerbate autism, or may be important in future research, include certain foods, infectious disease, heavy metals, solvents, diesel exhaust, PCBs, phthalates and phenols used in plastic products, pesticides, brominated flame retardants, alcohol, smoking, illicit drugs, vaccines, and prenatal stress, although no links have been found, and some have been completely dis-proven.

And remember in my Part 1 post where I said I was going to discuss the "presumed Causes...including one much talked about cause that I've discovered has no supportive evidence to link it to autism.  Can you guess what it is?"  Well, listen up because here it is:

Parents may first become aware of autistic symptoms in their child around the time of a routine vaccination, and this has given rise to theories that vaccines or their preservatives cause autism, which was fueled by a scientific study which has since been proven to have been falsified.  Although these theories lack convincing scientific evidence and are biologically implausible, parental concern about autism has led to lower rates of childhood immunizations and higher likelihood of measles outbreaks in some areas.

That's right...it seems that the vaccinations causing outbreaks of Autism is unfounded, and that the doctor, whose license has since been revoked, padded his findings.  His name is Andrew Wakefield and he published his so-called findings in a British medical journal called The Lancet.  Upon investigation, it was discovered that he manipulated evidence, falsified his findings and broke other ethical codes.  How many parents of autistic children out there freaked out thinking it was caused by vaccinations?  Some were looking for someone and/or something to blame and eagerly jumped on the bandwagon.  And how many still are?  It was only recently that Wakefield was banned from the medical community.  The Lancet retracted the article in 2010, and the BMJ (British Medical Journal) declared the research fraudulent just earlier this year! 

The scientific consensus is that no evidence links the vaccine to the development of autism, and that the vaccine's benefits greatly outweigh any risks.  (Wikipedia)

I was reassured learning this because I'd hate to think that something I could have held back from doing caused my son autism.  Although, with Emerson, the signs were there since infancy...I just didn't recognize a lot of them because I didn't have the required knowledge.  However, I do believe more research is needed.  While there have been a handful of new researches into the MMR claim and they found no supportable evidence to link the vaccination to autism, they also have not completely disproven it.  Perhaps it still plays some role somewhere.  The benefits of administering the vaccine, however, outweigh the risks of withholding it.  At least in my opinion!

Go ahead and reread all the Wikipedia stuff again.  Biology is not my strong suit and I had to read it through a couple of time myself! LOL  I don't think I'll talk about the History in this post...I'll save that for a day when I have nothing else to write about (so, you know, several years from now! hahahaha).

My next installment will be about Diagnosis and maybe touch on Management.  I'll also do an overview of the causes...put into a little easier wording.  I also recently read a little more about the vaccination debate and want to tell you all a little more about it.  That post might be a while in coming, however, as we have lots going on in our little corner of the autism world with Emerson's upcoming school board evaluation and second OT appointment.

Thanks for joining me today!