Tuesday, December 30, 2014

I Love Science

Evan officially entered his second autism research study today. His first was at the time of his diagnosis; we agreed to have his diagnostic testing paid for by the Autism Treatment Network (funded by Autism Speaks), and upon confirmation of his diagnosis of Autism Spectrum Disorder, he was entered into a data base of thousands of ASD patients across the U.S. and Canada. Every year I am required to fill out piles of paperwork to update his profile within the data base; it is the largest cumulative gathering of ASD information in existence and was was established to provide high quality, coordinated medical care for children and adolescents with autism and associated conditions.

Today's research study is titled Biomarkers in Autism: Bridging Basic Research with Clinical Research. The purpose of the study is "to find biomarkers (a biological substance or feature that can be measured) for ASDs that could help clinicians in the future to identify people at risk for ASD and to possibly guide treatment."

In other words, imagine if 3 years ago as I was waiting months to get Evan tested, his Primary Care Physician could have tested his blood or urine, or looked at his face or hands to determine if it was likely that he did, in fact, have autism. Wow. Now, imagine the significance of this in the future. What if testing for ASDs became part of  newborn screening, or child well-visits? Early testing and intervention can change the course of a life time for these kids. Do you think I don't lose sleep over the fact that Evan was over 4 years old before he was diagnosed? What if he had been diagnosed at age 2? Or age 1? Or as an infant, when he was already displaying signs of tactile sensitivity?

Here are some cool facts about this research study: it's funded by the Simons Foundation for Autism Research Initiative; it takes place at 5 centers that are part of the Autism Consortium (these include Boston Children's Hospital, Tufts Floating Hospital for Children, the Center for Children with Special Needs and Developmental and Behavioral Pediatrics, Boston Medical Center, Lurie Center at Mass General Hospital, and UMass Memorial Health Center); 100 children with ASD between the ages of 5 and 10 will participate; the lead researchers are from Boston Children's and the Lurie Center.

What did I subject Evan to (I know some of you are wondering)? This study is probably about as easy as they get. First, I had to collect Evan's first morning pee upon waking. We brought that with us this morning to the Lurie Center, where we met with one of the research clinicians, who took pictures of Evan's face (from all angles) and hands, and also photocopied both hands. We ended the visit with a blood draw, by far the worst part. I also had probably a dozen or more pages of questions to fill out. And, that's it! One visit, and this particular sacrifice for science is all done.

Now comes the long wait, probably 1-2 years or more, for this study to be published. Here is to hoping that this study is a success and that some statistical significance for biomarkers is discovered. I hope that as an adult, Evan can feel proud of his part in changing the face of autism. I love that we live near a science mecca and that he is actively seen in an institution that is on the cutting edge of autism research. He will not always be a cooperative participant, but while I can get him into safe studies, I intend to. I'm either the cruelest or coolest autism Mom around :)

Evan during the study data collection:

Monday, December 29, 2014

When is Vacation Over?

I think many parents of children with autism will tell you that holidays and vacations are a stressful time; the lack of structure and unpredictability of the days can be more than some kids can handle. We are 6 days into our holiday break, and Evan has been fantastic for 5 of those days. Today, I finally started to witness a ripple in our calm waters.

We started the day with an overstimulating trip to Bonkers (think lots of video games and an indoor climbing structure), but I was sure to be there first thing and the place was practically empty. Evan and Shayna had a blast, and left nicely about an hour and a half later. Next, we returned something to Toys R Us, and though Evan got testy in the store, it was relatively smooth sailing. We then had lunch, a little down time, and then Evan had an afternoon playdate. The boys did a great job playing, though it was clear by the time his friend left that they were both just a few minutes past their ending point. Even at that, Evan was still in good form, and after seeing his friend out, he went immediately to craft a picture for another friend.

And then,

The problem was....wait for it....wrapping paper. Yep, wrapping paper. The piece I offered him to wrap his friend's picture in was ripped. THE HORRORS! But, at this point, Evan had had a full day and was tired and he simply just fell apart. He screamed for a bit, which I was happy to let him do, but then he started head banging. Now, he head bands a couple of times per week; it used to be quite traumatic for me (and for him), and I would have to protect his head to prevent him from really hurting himself. More recently, the banging has been much lighter and will be anywhere from 1-5 hits of his head, and then he'll stop on his own. It has been months since I've had to intervene - until, that is, today. From the kitchen I witnessed some of the most forceful head banging I've seen, and though it was on the arm of the couch, I worried that it was hard enough to go through the padding to the wooden frame underneath...I ran to him, scooped him up, and hugged him into my torso, where he continued to scream until he fell asleep.

It's been awhile since I've had to worry about this, but when he shuts down like this after a meltdown (not an atypical reaction for him) that has involved violent head banging, I seriously worry about his risk of having a concussion. His pattern is to fall asleep so deeply that he cannot be roused, and so you can see that when that follows hard head banging, I might worry a bit. Today, I obsessively checked his forehead for any signs that he had actually hit the wood in the arm rest, and when I didn't see any indication of that, I let him sleep but nudged him frequently to wake up.

He finally woke after about 1 1/2 hours, grumpy (of course), which lasted another 1 1/2 hours and included significant agitation over the fact that Shayna had taken off her socks and her feet were dirty (true, and not true). I was able to laugh over this completely irrational reaction, but it did require some deep pressure and rocking to help him get over it.

Ahhh....the joys of school vacation...

Evan asleep on Mama a few minutes into his shutdown:

Friday, December 26, 2014

Teaching Language

Disclaimer: I think if you are reading this post and your child is non-verbal, you'll probably think that I have nothing to complain about. It's true that we are incredibly lucky that Evan is verbal...this post is just my perspective from the middle of the spectrum and how I view his learned use of language.

     The thoughts that I'm about to share have been ruminating about in my head for a long time now, but Evan has been yelling "MOM" quite a bit these days and it has inspired me to finally commit these thoughts to written words...

Evan has always been verbal. He had the age appropriate amount of words from the beginning, but his use of language is years behind. During a school week, he has speech therapy 4 times per week (in school and one private session). His behaviorists and psychologist also work on communication goals, so his social use of language is addressed an additional 5 separate times per week. The progress he's made in communication is a result of these intense and frequent sessions...he is working very hard.

I realized early on in this process that much of what he is saying is learned from other sources (his play, for example, is often "scripted" from movies, TV shows, or video games). This is quite normal  for a child with autism and will hopefully lead to more normal independent thoughts, play, and conversations. But, when someone is taught how to converse, they are taught the habits of the person teaching them. So, for example, when Evan was little he called his sister, Shayna, "Nay-nay", and his speech therapist and behaviorist would always correct him. Suffice it to say that the super cute nickname was phased out (it would have been at some point anyway) faster than I wanted. :(

More recently, Evan has taken to consistently calling me "Mom" and Jayme "Dad". O.k., so I realize that those are the common and acceptable monikers of parenthood, but in our house I have always been known as "Mama" (pronounced Mumma) or "Mum", while Jayme has always been "Daddy". I have no doubt that his use of Mom and Dad has been learned from school, speech therapy, and behavior therapy, but whereas our girls would hear talk about "Mom and Dad" at school and be able to come home and call us "Mama and Daddy", Evan does not have the ability to be so flexible in his thinking. He hears the parents in his house talked about as "Mom and Dad" and so that is what he calls us. Not one therapist has ever thought to ask us what we prefer to be called, and though I never expected that question, in hindsight I wish that some of the language he was taught was language we use in our house (seems like a simple request, does it not?).

It's hard to adequately explain why this is difficult for me. In part, I think, it's because it's a reflection of how his brain works...that sometimes he has to be taught the way others think and then that becomes the rules for him...that he doesn't have the language skills to make many of his own feelings, thoughts, rules known to the rest of us, and so we have to mold him into what is socially acceptable. I don't like that. I get it, but I don't like it. I'm the first to admit that I don't have all the answers when it comes to him, but much of his childhood is being scripted by other people, not by me, and sometimes that is a tough pill for me to swallow.

So, when he calls out "MOM", I have to bite my tongue to hold back from saying, "please call me Mama"...it's a little stab to my Mama identity, if that makes sense. This one just nicks the surface, though I can't help but wonder how long it will do so.

Sunday, December 21, 2014


Evan had his birthday party yesterday at Pump It Up (an inflatable jumping place that happens to be more than accommodating to kids with autism, and I have been incredibly impressed multiple times by their service). We are still at that stage where we can invite the whole class, so that is what we did, and most of his friends were there. Evan had a great time and held it together until the very end...altogether it was a huge success.

Here is what I'll remember: when the kids were all waiting to go back to the jumpy room, one of the employees sat the group down, called Evan up to the front, and said, "Let's all yell Happy Birthday Evan as loud as we can!".

One boy raised his hand and said (and I'm paraphrasing just a bit because I can't remember his exact words), "Evan doesn't like loud noises and we have to sing Happy Birthday quietly".

And, just then, my heart melted. Thanks Little Guy for being such a good friend. My greatest wish is that Evan stays surrounded by people just like you. Thank you to the parents of Evan's friends, who are teaching their children kindness and tolerance, who are providing an amazing support system for not only Evan, but his Mama too :)

Wednesday, December 17, 2014

Family of Four

     I know that I already posted today, but I have to write this amazing thing that happened today before I forget.

So, Evan's teacher stopped me after school today to tell me that the class was drawing family pictures for gifts, but Evan would only draw 4 people. He left out your husband, she said, and when she asked why, Evan told her that Dad was traveling and would be gone for the night. She tried 4 times to have him draw the family as a whole, but each time Evan explained that Dad was traveling and so he couldn't include him in the picture.

(O.k., maybe just to me)

But, the funny thing is that Jayme's trip was cancelled at the last minute. Though Evan saw Jayme at home last night (when he should have been gone), I guess we never thought to tell him that the trip was cancelled, and Evan obviously didn't figure it out on his own. Evan even saw Jayme this morning, again when he should have been gone, and yet, in his mind he expected Jayme to be gone overnight on business, SO wouldn't include him in the family picture.

His teacher suggested that we try again in a day, and then maybe Evan would draw him in. It's actually a good idea. But first I guess we should tell him that Dad is back from his trip?

This autistic brain is an astonishingly amazing thing....


Last night was the first night of Hanukkah, so I pulled out our menorah for lighting. Well, didn't this just confuse Evan...even though we've had the same menorah for years (given to me by a dear friend who has since passed away), the picture in his head did not match the reality.

 "These are people", he said, "this is not a menorah". 

So, Jayme drew a stick figure menorah that he placed in front of the real thing, explaining in pictures how our menorah worked just like any other menorah, matching up the candle holders.

"Hm", Evan said, and walked away, thus ending his participation in the lighting of the candles.

Oh, life can be SO confusing at times...

Thursday, December 11, 2014

Happy Birthday

     Well, a 104.4 fever is not a great way to start your birthday, but hey- it's pretty clear that we don't follow the easy path here at our house. Evan is 6 today, and for the first year ever, he is excited about his birthday and seems to have a significantly better understanding of birthdays then he ever has before. I'm still not sure if we will sing to him...that is something that he has shown very poor tolerance for in the past; Lily graciously passed on the ritual for her birthday 2 weeks ago when the suggestion of singing to her sent him into a tizzy.
     There are many things that I never pictured as part of our lives 6 years ago, still changing poop being at the top of my list. Evan can't ride a bike, he is back to not dressing himself (yes, that lasted only 3 days), we shower with him - I could go on, but I won't because it's his birthday and there are so many positive things to celebrate instead. I'll say though, that at least for this Mom, there are no milestones or positive steps that come without a sense of sadness...sadness for the things "that aren't", if that makes sense. I think that feeling is normal, but overshadowed by the "sunshine and roses" of the moment because, hey - who likes a downer? If you know what I mean by this, just know that you are not alone in that feeling.
     Anyway, at 6, Evan is progressing in ways that we could only have dreamed about. He has found a love of drawing, and we are drowning in paper; this is significant because he did not have his own markers until October of this year. I could never get him to color, draw, craft, etc, so to see him do this is such a joy. I actually made his school COTA (occupational therapy assistant) cry yesterday when I was telling her how amazed we were at his progress, so I hope that illustrates how far he has come in this skill.
     Evan let us know this week that he is having difficulty at school with lunch and recess. I'll spare the details on how this came about, but the cliff note version is that recess has too many decisions on what to do, and lunch is too loud. We have been pushing him hard to learn how to advocate for himself, and so the fact that I was able to get this information from him is amazing (now to get the school to respect this and help him is another issue).
     Here is to a speedy recovery for my little buddy (Evan's birthday party is Saturday, and in the throes of his fever his words after "I don't feel good" were "can I still go to Pump It Up?"). At least he has the day to play with his new toys. Happy Birthday Evan, I can't wait to see what the next year brings :)

Thursday, December 4, 2014

Hard Voices

     The last few days have been full of language revelations for me in regards to Evan. We've had several conversations that capture so well where he is at. I'll start with our conversation 3 nights ago:
Evan: If I wake up in the middle of the night, will you help me?
Me: I will.
Evan: If I wake up, will you help me?
Me: I will. I will help you.
Evan: If I wake up, will you help me?
So, now I know that something is not connecting for him.
Me: Yes.
Evan: Thanks.

Two Days ago:
Me: Evan, I'm going to pick you up early from school today after recess but before lunch.
Evan: After recess?
Me: Yes.
Evan: After recess?
Me: Yes.
Evan: Before lunch?
Me: Yes.
Evan: Before lunch?
Me: Yes.
Evan: What is before mean?

??? I had no idea that he didn't fully understand the concept of 'before'. Wow.

     I emailed some members of his school team right away to pass along the above two conversations, with a plea for them to please trust me when I tell them that there is no way that he is understanding everything that is being said to him at school. The behavior therapist emailed me right back...a great explanation that the difficulty with an autistic brain is that there can be these great gaps, where Evan might understand it when you ask who is before him in line, but not understand the concept in another situation; the difficulty, of course, is making sure he is always understanding.

     The email I received back from the SpEd teacher, however, got me a little worried. She explained, that, yes, abstract concepts can be difficult, but that is why Evan has a visual schedule and they frequently use words like "before" and "after" throughout his day. But then I thought: huh, the SpEd teacher is with him 2 times per week for 45 minutes and has NOT made any modifications to the curriculum at this point in the school year. His teacher is not with him for specials (art, gym, etc), lunch, or recess. So, has anyone reviewed with those other teachers Evan's language difficulties? Theoretically, this is supposed to have happened. And, those teachers are supposed to have read his IEP. Hmmm....

     So, this morning in the car, I had this conversation with Evan:
Me: Do you understand everything in art, music, and computers? (not all the specials, but I didn't want to overwhelm him with the question)
Evan: I don't understand Mrs. XXX.
Me: You don't understand Mrs. XXX?
Evan: Sometimes I understand, but not a lot. Some people have hard voices.


     I tried to get more information about what a hard voice is, but he was done talking at that point. I LOVE that he can verbalize this to me. I HATE that he has been sitting in at least one class (and really, we all know it's not just this class), not understanding the majority of what his teacher is saying. And, the feedback that I get about him: he is doing GREAT!

     What do I do now? Well, a team meeting, with our attorney, was already in the works. I was firm today with the coordinator and said, no - this can't wait until January 12, which is the first date the entire team can get together.

     Seriously, this is consuming my thoughts. This, and no sleep, and my head is a mess. So, from one tired SpEd Mom to all the others that will read this post...push....push....fight...fight...these kids get one chance at a better life. Don't let anyone minimize the importance of one day, or one week, or one class. I REFUSE to let Evan fail, it's just not going to happen.