Thursday, September 25, 2014

Is The Honeymoon Over?

     I spent 5 minutes this morning giving Evan full on body pressure before school. He was angry, or more accurately, raging. Rage looks like what you think it would look like - hands fisted, body rigid, face red and scrunched up; there is often a verbal component (think about what a primal noise might be that accompanies rage, and you're probably close to what Evan was doing), and throwing - this morning he threw a wipe, so thankfully nothing that could inflict damage. We knew this was building because any attempt to talk to him before this was met with him screaming.

     Full body pressure for us looks like this: Evan is on the floor and I am on top of him. One of my hands is on top of his head pushing down, the other hand is under is head but on top of his shoulders, also pushing down. My trunk is on his body; I am not dead weight on him, but there is definitely enough of my weight so that he has difficulty moving. My legs are on either side of his body giving inward pressure to his legs (usually I am on my knees just so I have better control of my body). We stay this way until he gives me some indication that he is ready to be done.

     Today when we were done, he was able to calmly let me dress him (he is not independent in dressing), and said, "when you hug me, it helps me be not angry".  WOW. The fact that he can verbalize that is AMAZING.

     So, we go about the rest of our morning routine and get to the car. He started to ask me if today was apple picking day, as he knows that a school field trip is coming up. I explained to him that the field trip is Monday and then had to review the days of the week and when Monday will happen; time is an enigma to him, so we have conversations like this a lot.

     Then, he asked me something that made alarm bells go off in my head. He said, "does apple orchard mean the same thing as apple picking?".

     Holy crap, I thought, and let me explain why. On Tuesday I had my first meeting with his teacher and the SpEd teacher. All I heard was how GREAT he was doing - he's happy, he's participating, he is not showing any signs of delay, he is answering questions appropriately, etc., etc. Sounds great, right? Well, he has this thing called AUTISM with a PRAGMATIC LANGUAGE DELAY, and - oh, ya...I didn't make this up, and he doesn't hang it on the hook in the closet on his way out the door as he heads off to school. O.k., I flags went up immediately, because he CANNOT be doing GREAT all the time - it's not possible. And, his teacher pulled the line I cannot stand, which is "oh, my son does that too!" when discussing inability to work with me on things at home, which means to me that she doesn't fully understand what is going on with Evan. Oh, her son beats his head until his nose bleeds too? Didn't think so...

     So, now I have this question from Evan, does apple orchard mean the same thing as apple picking. I thought he was doing GREAT, so how is it that he has sat through a week's worth of discussion at school about the upcoming field trip and he doesn't understand what an apple orchard is. My explanation to him was quite simple, and I explained that an apple orchard is where you go apple picking; this will need some more instruction from his teacher (who I emailed right away), but it was enough to hold him over.

     Evan is polite, friendly, a good listener. He follows rules, laughs at jokes, tries to be a good friend. He is a good boy, so far, at school. He has an amazing memory, is probably brilliant in some capacity, knows how to read a room, is good at copying other kids. Sadly, all these things are working against him. Because as he sits and listens to the teacher and is GREAT, he is missing concepts that they don't know he is missing. Like, how you go apple picking at an apple orchard.

     Back to this morning - this rage was one of three things: he was tired, he was having an atypical reaction to the typical 5 year old Kindergartener emotion of not wanting to go to school , or he is starting to have anxiety about school because something is not making sense to him. Maybe it was all three, but after he asked me the question about the apple orchard, and after my meeting with his teacher, you can guess where my head is at. So for me, the honeymoon is definitely over, and I'm back in defense mode to make sure all his needs are being met. For Evan? I'll have to get back to you on that...

Tuesday, September 23, 2014

The Unintended Gifts of Autism


     If you know me, you'll know that I'm always looking for the silver linings of autism...I believe that there are many. Here is another:

Lily (our 10 year old) is in a pull-out program at school for gifted/academically advanced children. In the Enlish/Language Arts section, they are currently reading a historical fiction book; Lily told me this morning that her group was brainstorming possible disabilities that the sibling of the main character might have, and the teacher told them that they are the first class that has ever identified this issue (the teacher has been doing this for many years). I already guessed the answer to my question, which was "who was the person who first brought this up?". Yes, it was Lily...she blogged about it as part of her homework - the first student to ever discuss this. Thank you autism (of course, one of the disabilities that they guessed the character has) for giving my family insight, compassion, awareness, and sensitivity that crosses all aspects of our life. Good job, Lils - we are SO proud of you!

Sensory Overload Simulation

If you've ever wondered what it feels like to be in sensory overload, or wondered what the big deal is, watch this video. This was produced by a non-verbal young adult with autism; though Evan's autism is not as severe as hers, the written text in the beginning of the video could have been written for him...

Thursday, September 18, 2014

Few Words Needed...

This is what I found at Shayna's open house last night...insert tears of heartache and pride here.

Tuesday, September 16, 2014

The Nose Knows

     We've entered a bizarrely funny new sensory phase with Evan...he is obsessively smelling things. Mostly me and banana muffins. I'm not joking. Fortunately, the smell of me is not making him gag, so I'm feeling pretty good about that; in fact, last week he told me that I smell delicious. Huh - who knew?
     Evan's sense of smell isn't what I would consider to be too sensitive. Lily was much more sensitive and would gag, and once even threw up, with certain smells. The fascinating thing with autism is that we actually have no idea what his senses are doing, so while most people smell things similarly with slight deviation (most of us don't like the smell of skunk, for example), one cannot assume the same for those with ASD (a percentage of which see color when the look at a number - fascinating, huh?). I know that sometimes when he hears a noise, his body will react like it just received an electric shock, I know that sometimes riding in the car is painful to his body because of the small bumps in the road, I know that sometimes he describes things that are happening to his eyes that we cannot understand. Smell, it seems, is not far behind.
     It is quite clear to me that Evan is sensory seeking when he smells things obsessively. I don't mean taking a few whiffs of something, I mean smelling so that it sounds like he is a dog for an extended period of time. The last time he went with me to take Lily somewhere, he grabbed a banana muffin on the way out the door and sniffed that thing for 30 minutes. When he is smelling my neck in a similar fashion, I can't help but to laugh and enjoy the's as close as I'll ever get again to a little person snuggling me so hard that you aren't sure where you end and they begin.
     The great part about writing about this stuff, and reading other blogs, is that I guarantee that someone is going to say that there kid did the same thing. Of course, the autism saying of the moment is "if you've met one person with autism, you've met one person with autism", and while I agree with this, there are many, many traits that a lot of these kids share. Can I tell you how many blogs I've read about picky eaters and that every single one of them loves popcorn? Yep, Evan too. Or, how many kids slept with their parents, or potty-trained late, etc., etc.? I find it comforting and fascinating all at the same time.
     What I haven't read anything about yet is the dog-like smelling phenomenon that Evan is displaying, but I'm sure I will. When I find it, I look forward to laughing along to this 'add it to my list' craziness that we call autism :).

Friday, September 12, 2014

First Week of Kindergarten

     Guess who was upset that tomorrow isn't a school day after I picked him up today? Yep, Evan had a great first week of Kindergarten and I am incredibly proud of him! I owe this to several things, a couple of which I mentioned in my last post (the 6 visits into the school before the first day, and the full day preschool). As I listened to some of the Moms at pickup discussing how tired and spent their children were this week, I thought how nice it was that I had already been through that. Now, the bottom may fall out next week, but I think he really likes school.
     Here is why I think he was so successful - his day makes sense to him. The day is very structured and is very supported by visuals. The attached picture is the daily communication sheet that I get; apparently I need pictures too (I felt this was important to add to this blog, because I have never seen anyone else share their teacher communication sheet before). Notice the picture of headphones...unlike in preschool, where I couldn't even get them to give Evan his headphones during a fire drill, his headphones are used throughout the day; he is responsible for keeping them with him and for using them when his schedule dictates. His teacher was so receptive to his headphone use that it was truly refreshing; this is a teacher that did her autism homework. As I explained to her, imagine his sensory system as a bucket - a noise here, a noise there, and his bucket begins to fill. If the bucket gets filled to the top, his system can no longer take it, and he begins to breakdown. I will also refer to this phenomenon as how "regulated" he is; the better regulated he is at the end of school, the better the rest of his day is and the greater the chances are of carrying over his lessons from school to home. Remember too that his day does not end with school; he currently has 3 afternoons of therapy, not including his Saturday schedule, and that may increase in the next few months.
     Now, Monday was not without it's problems. He was not met at the drop-off line by his aide, which he was supposed to be, and he was not offered an additional afternoon snack. I also figured out on Tuesday morning that he was told by the nurse to "pick only one thing for snack", which he took quite literally and had only one of his two yogurt drinks. Of course, I was immediately on top of all those issues and they were resolved by Tuesday afternoon :).
     I am so pleasantly pleased, I can't even express it. I can say with honesty that for Jayme and I, Evan's milestones are significantly more meaningful than they were for the girls. I know - that sounds terrible; I don't think this was the case when he was younger, but as he has grown older and we have watched him struggle, for him to be successful takes on a new meaning. It's not that we thought he wouldn't reach certain milestones, but we know how much harder it is for him...I think some of you will understand this better than others.
     We also find his brain so incredibly fascinating, and we are constantly figuring out things about him. Just this week Jayme realized that Evan doesn't understand the concept of nicknames. The way he figured this out was that he was talking to Evan about Star Wars, specifically Annakin; Evan didn't know who Jayme was referring to until he said "Annakin Skywalker". Jayme then tested out all the Star Wars guys: Han, Luke, Chewy, etc...Evan didn't know any of them until it was clarified Han Solo, Luke Skywalker, Chewbacca.  We have spent the days since then having frequent discussions about our families nicknames as he has tried to figure this out in his head.
     One of the communication breakdowns that I had this week (we usually have several), was when I was talking to Evan about the book Chica Chica Boom Boom; they read it this week in school and made a tree to accompany the story. I asked him if they made a tree when he read the story last year in preschool, but he didn't understand what I was asking and said, "I don't go to preschool". I tried one more time to clarify, but I was not able to get him to understand; now, I know that if I had asked the question in such a way that made sense to him, that he has the knowledge in his brain to answer me...only I couldn't figure out how to do that. This is actually such a classic example of his language deficit, and I hope that when I say that it is hard to communicate with him, that this sheds a little light on what I mean by that.
     I realize that I'm rambling, so I'll stop. I know the honeymoon period will end soon, but I wanted to share my happiness while I had it. Happy first week of school - woohoo!!

Monday, September 8, 2014

First Day of Kindergarten

     Well, my baby is off to Kindergarten. Fortunately, having been in full time school (his preschool days were actually longer that what his Kindergarten day will be) for 1 1/2 years, and having visited his new school 6 times before today helped, and he went off without any trouble! We really didn't make any big deal about it, as going to school is very routine for him, so when I say off he went, keep in mind these few differences from most of the other kids: there were no new clothes, no new shoes, his hair wasn't brushed, no formal pictures, no walking him into the school, and no kiss good-bye. There was a new back pack and lunch box, bought a month ago, and his teeth were brushed only because he wanted to.
     Our school offers the Kindergarten parents a breakfast on the first day of school, dubbed the "boo-hoo breakfast". I had wanted to attend when the girls went to Kindergarten, but couldn't because I always had a younger one home. Today, I chose to not go and took my thoughts to the trails for a short run instead. I realize that every single parent of a Kindergartener has some kind of worry today...remember that Evan is #3, so I've been down this road before. I feel, though, that my worries are different and, honestly, it makes it a little hard to connect to other parents. I don't worry about full day school, about strangers taking care of him, about no longer knowing what is happening in his day, about whether he'll cry, etc., etc. - I've done that already...I've had that grief when I had to send him full day at age 3 because being in school was better for him then being home. That was a hard pill for me to swallow. My worries are more like this: will he understand, will the adults around him understand that he may not be understanding, will the specialist teachers have read his IEP and understand the he he is not following directions because he is bad but because he didn't understand what they are telling him, will they know that when they say maybe and probably that he doesn't know what that means unless they say  maybe yes or probably no, will his aide reassure him at snack and lunch that he is not going to choke and that it is o.k. to spit out his food, will they know that he cannot infer so that when they tell him the rules of the school it is done in such a way that he understands (i.e. if they tell him not to run in the hallway, he may not know that the rule applies to all the hallways and might think that it applies to only the hallway they are showing him at the time). My list goes on, but do you see my point?
     I'm actually feeling quite positive about the year, and I do think he is going to make great progress. Like all parents, I'm expecting some school mornings not to go as smoothly as it did today. I will be anxiously awaiting the 3:00 pickup time to try to assess how his day went. I have my first meeting with the Special Ed teacher and his regular teacher in 3 weeks, and though the school doesn't know it yet, I am already in the process of getting an outside person in to the school in a few weeks to observe his day to make sure all is going well.
     Lastly, is anyone curious about whether I cried or not? I must admit that I got a bit weepy twice: once before we left the house, and once after I drove off from school. This was not sobbing like I had with Shayna (Lily was a spitfire, and was SO excited for school that I found it impossible to be sad), but more of a sadness that this was not the way it was supposed to be. Yes, I still have these moments...they creep up when the differences between a "typical" kid and Evan are staring me in the face. Today is definitely one of those days. I'm lucky though, because unlike most other kids, he has about a half a dozen additional adults at school that are looking out for him today, and for that I am grateful.

Tuesday, September 2, 2014

Food Update

     I don't think I've talked about Evan's most recent food struggles. I've mentioned many times that he is not a good eater, much to my dismay, but I've learned to let a lot go and we get by. Recently, though, he choked on a pea pod and threw up; I was out of the house, so my sister-in-law took care of him and he seemed fine when I returned home. Unfortunately, a few days later he started obsessively asking me if he was o.k. while he was eating, to which I always say yes. Then, he'll ask me if he is going to choke or throw up, to which I always say no. Fast forward a couple of weeks, and he has started spitting food out when he is eating. At first, it was maybe once a day, but now it is several times a day, or even several times in one meal. He even has taken to spreading out his own napkin or tissue near his food so he can spit more easily and without asking for help. This appears to be totally anxiety related, not sensory related, as sometimes he can eat and be totally fine.
     Now, I'm his Mom, so he does a lot of things that don't gross me out. You'll all remember that I'm still changing his poops, so a little chewed up food doesn't phase me. However, he is about to start Kindergarten...need I say more? If this was a child next to Lily, she would probably start gagging and throwing up herself, so I have to assume his fun new habit is going to offend a few kids, and probably a few adults. The problem with this is that if someone reacts in a negative way that makes him uncomfortable, then he could stop eating altogether, which is what happened in preschool. Once I realized that he wasn't eating lunch in school, we had to develop an eating program for him (which wasn't all that successful), and we've already worked in extra snack time for Kindergarten anticipating a continuation of last school year's issues. Ugh.
     Here is a not so fun fact of Evan's autism - the slightest hiccup in any part of his day can result in months or years of atypical behavior. For example, one day we allowed him to leave the house with a costume on, and it essentially didn't come off for over a year. He is sleeping on the floor of our room...why? Because one day he wanted to fall asleep in our room, and he is our baby, so how could we resist? Well, 6 months later (or more, I've lost track) he is still doing it. His mind is incredibly rigid - it's why we ate Bagel World every Wednesday before his therapy for the entire school year. Some habits, or behaviors, are tolerable but others, like spitting out food, are not.
     I'm not looking for advice, but sharing our struggle. Difficulties like these are incredibly common, but definitely not talked about. We have decided to significantly increase our home therapy, which we should have done right away, so we are looking at adding an additional 8-10 hours of having someone in our house teaching our child how to be a child so that he can learn how to be an adult. I'll surely be blogging about that in the future, but in the meantime, if your child is sitting next to mine at lunch next week - I apologize :)