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,
                it
                   all
                       went
                               downhill.

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

Friends

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.

FASCINATING
(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....

Hanukkah

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.

WOW

     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.


Sunday, November 30, 2014

Today's Wakeup Call

2:45 AM

Nope, not kidding. Evan has been awake since 2:45 am, when he got up to go pee and never fell  back to sleep. Jayme took the fall for this one, and spent an hour on our floor (Evan sleeps on a mattress at the foot of the bed) trying to get him to back to bed, but anytime Jayme would leave him, Evan would start to cry and sit up to bang his head on the mattress. So, at 4:00, they went downstairs. Yes, I did fall back to sleep after that (I couldn't fall asleep last night - too many days of turkey eating I think - and so was working on about 2 hours of sleep at that point). Jayme didn't even know this...he took Evan on his own, I think because I had just done this on Thanksgiving.

I woke at 6:30 hearing Evan being super chatty (to Shayna), so headed downstairs to relieve Jayme, who was asleep on the couch. I'm not actually sure yet what happened while I was asleep, but I know that Evan was dressed, had eaten Goldfish and drank chocolate milk, and was working feverishly on art projects. Jayme did manage to get himself back to our bed at around 9:00.

So, now I'm bummed and grumpy. My window for running has already passed me by since we have other plans today. Evan is also having this urinary frequency and daytime wetting issue that is just escalating out of control (it started at school and I thought it was sensory based - yes, I had his urine checked - but, now I'm not so sure), and I'm trying not to get frustrated but my patience is wearing thin. I need sleep to remain calm, and I'm just not getting it. Because Evan's new standard wake up time is between 5:00 and 5:30, he has been going to bed earlier - and by earlier, I mean around 8:00 pm, but I'm not going to bed any earlier. Then, throw in a couple of days like today in one week, and UGH, I am one tired Mama.

Since I wasn't so thankful on Thanksgiving, I'll share my thankful list for today:
  • I am thankful for coffee.
  • I am thankful that Evan's next neurology appt is in two days, so that I can get some help and guidance with these sleeping and peeing issues.
  • I am thankful for marathons since, even though I've barely been running, my next marathon in 6 days gives me a good excuse to escape for 2 days; though I'll come back even more tired and sore, I get to take off my Mama hat for a bit, which (I'm not ashamed to admit) I really need right now.
Let me leave you with a link to an amazing piece on being thankful. It is a bit off topic from my post today, but so relevant to the day that Evan dressed himself for the first time a week or so ago. For those special needs parents that read this, it will probably hit the nail on the head. For those village people that support us, this will give you great insight to our thankfulness.

http://themighty.com/2014/11/we-are-more-thankful-than-you-are/

Now, here is to better sleep tonight :)

Thursday, November 27, 2014

Really?

This pic was 50 minutes into Evan's literal midnight foray. I'll be honest - I'm finding it hard to be grateful this morning through my tired and grumpy haze. Evan, though, is perfectly chipper. Grumble, grumble...

Thursday, November 20, 2014

The (Not So) Subtle Differences

     I met a Mom last year whose high school aged son has autism, and I remember her talking about how, even as a teenager, she was still grieving life milestones that he wasn't meeting. Things like going to the prom. Huh, I thought, I hadn't considered that I might feel that way.

     I spent many months before Evan's diagnosis wrapping my head around the fact that his childhood wasn't going to be what I expected it to be. Then, I moved on.

     But, not really...

     I understand it better now, that Mom's point of view. It seems like it's not that big of a deal, but all these little (not so) subtle differences add up...all the parties that are missed, all the sports not played, all the friends not made. That is the thing about inclusion - you are surrounded by NORMAL, or at least the perception of normal (because no one is without their quirks, after all). So, when your kid falls off that bell curve, it stings - sometimes a little, and sometimes a lot.

     Where am I going with this? Well, I'm going to feel a little sting tomorrow, when all of the Kindergarteners except Evan (and the boy throwing up in the nurses office today) will be performing songs for all of the parents. Why not Evan? According to his teacher (and I believe her), it was clear immediately when the kids first practiced their songs as a whole group that Evan was uncomfortable. Can you imagine being surrounded by 100 screechy voices when you have a hearing sensitivity? It was the sound, but I'm also sure it was the volume of people. The teacher and I talked, and I told her it was fine if he chose not to participate, which, of course, is what he chose. Today, he didn't even attend the rehearsal and instead spent the time with his aide doing "fun activities".

     I know, I know, it's just a Kindergarten concert. But, you've all been to one, right? I mean, the cuteness is off the charts! And, he's my baby...my last chance to do these things. Or, not do them, as the cards have fallen.

     So, do I go tomorrow? Do I go and watch his classmates and friends? Will that be a little sting, or a big sting? I don't know...
I did have to pick him up early today with an ear ache (which is how I know there was someone throwing up in the office), so maybe I won't even have to decide tomorrow depending on if he goes to school or not. Stay tuned...

Tuesday, November 18, 2014

Smoothie, Evan Style

How do you keep a kid healthy when he eats marshmallows for breakfast and ice cream for dinner?
By spiking his smoothie, that's how. One of the best patterns I ever established with Evan was to have a smoothie in the car for him to drink as soon as he gets picked up from school. This has caused a few problems on the occasions that I forget his smoothie, but for the most part this system is working well. Every time he drinks his smoothie, I sigh with relief knowing that he is getting at least a few nutrients he needs, and I try not to panic if he doesn't drink the whole thing.

I've mentioned before how poor Evan's eating habits are. I wouldn't say he is picky, just more peculiar. As a toddler, he lived on Odwalla Superfood juice (yep, the thick green stuff) and we still try to get at least one cup of this into him daily. If he eats one meal a day, I consider that a good day; sometimes this means toast with cinnamon sugar butter. For awhile he wasn't eating any grains, so toast for dinner is fine with me. Tonight he picked chicken off his plate with his fingers, and I fork fed him rice while sitting on the couch and watching Spongebob - another success in my book, and the only dinner he'll probably eat all week. Right or wrong, we do not make Evan adhere to table etiquette; food in his mouth is our only goal, and I don't care if that means he eats his dinner on the floor while sitting on the heating vent.

So, I know what you're thinking: just don't buy marshmallows and ice cream. Well, duh. You'll often find ice cream in the freezer, but not always marshmallows. However, when he decides he wants marshmallows, you'll know - his 2 hour anger fit before school last Friday (the one that pushed me over the edge and prompted my last post) was because I didn't have mini-marshmallows. No, I didn't go buy any (I know, pat me on the back now), but if I had had them in the house, I would have given them to him. O.k., this is NOT what they teach you in parenting 101, but he does not have the ability to reason, and once a tantrum escalates, well...you end up with what I wrote about last week. This is why if he wants popcorn for breakfast, he gets it. And, this is why his smoothie gets packed with as much stuff as I can pack in it :)

For anyone interested, this is how I make his smoothie:
Organic banana, strawberries, and acai berries with organic apple juice and water. I make a big batch that lasts 2-3 days depending on if I have some too. To the large batch I add a heaping scoop of the protein powder and capsules of the Juice Plus crushed fruit/veggie blends. In his individual cup I add the probiotic and broccoli sprout extract (which we just started based on the recommendation of some good friends who have seen some success with this supplement in their son with autism).

Saturday, November 15, 2014

Autism Uglies

Imagine you knew a boy...

     He was cute, kind, and funny.

     But every day he got angry...really angry. And he said mean things like you're an IDIOT and you're STUPID and I HATE you! He even calls your daughters DUMB and UGLY.

     One day he hit you.

     Would you leave? You would leave, right? Weren't you taught that you should never let someone  treat you like that?

     But, you know where this is going - 

     You cannot leave because this boy is one of the greatest loves of your life. This boy is your SON.



Too dramatic? For me, this is real, raw emotion - the uglier side of autism. Though I try mostly to be funny when I write, and in our everyday life Jayme and I laugh easily, some days there is no humor.

I think typically this is when I say how thankful we are that Evan is verbal and is as healthy as he is. But, you know what? Sometimes, often times, his autism SUCKS. And his voice is sweet but his words can sting. When he is angry, and destructive, and mean, I know it isn't his fault. I also know that I am not an idiot or stupid. However, his anger DAY after DAY after DAY after DAY is mentally exhausting.

And, sometimes when Jayme and I are painfully honest with each other, we are afraid. We are afraid for his future. Some of these behaviors have already started to seep outside our walls, and though he is making such great progress in a lot of areas, his ability to write will not matter if he is throwing his desk at his teacher.

There is somewhat of a divide in the autism community of those on the higher functioning end of the spectrum vs. the lower functioning end of the spectrum. Often those of the higher end like to say that their autism doesn't define them, it is part of who they are and wouldn't change themselves, with conflicting views (voiced primarily by caregivers) at the other end.  Recently, Jerry Seinfeld's public self diagnosis of autism lit up the dialogue about this issue. Here are my current thoughts (as always, subject to change, and I hope that in 10 years I look back at this and am appalled by my honesty):
  • I hope Evan never wishes to change himself when he is older.
  • I feel helplessly in the middle, the part of the spectrum least talked about (in my opinion) and not well understood even by us (though autism remains an enigma no matter what part of the spectrum you fall on).
  • Right now, Evan's autism DOES define him - not in every moment, but in most.
  • I WOULD, in a heartbeat, take away Evan's autism, and if his older self reads this I hope he understands that he was an amazing kid but that his struggles are heartbreaking to watch at times and that we want most for him to be HAPPY, which is not always easy to achieve. If you disagree with this viewpoint, then I invite you to watch Evan's self-injurious and destructive tantrums...I simply cannot fathom that his life wouldn't be better without those types of episodes.
This post is a bit out of my comfort zone, as I feel somewhat exposed. On the other hand, sometimes, this is what life raising a child with autism is about. Nope, it's often not pretty, and yes, these days come with tears. As I was thinking about this post in my head, it occurred to me, though, that two years ago exactly, before his diagnosis, weeks like I described above left me feeling hopeless. I don't feel that anymore. Now, I see the long daunting path ahead of us - but at least there is a path, for which I am (yep, you guessed it) incredibly grateful.

Wednesday, November 12, 2014

The Sweet Milestones

     O.k., I have a ton of stuff to do and I'm supposed to be working. However, I need to get this down so I don't forget...
    
     Evan is 5 years and 11 months old. Today he dressed himself in both pants and a shirt for the FIRST time; a skill that most children begin to master sometime between the ages of 2 1/2 and 4. No socks and no shoes yet, but that is o.k. with me, as I am thrilled with this latest development. And, no, I never thought I would dress him forever, but day in and day out it is sometimes hard to see the light at the end of the tunnel...

 

Sunday, November 2, 2014

Halloween



 My favorite Evan one-liner of the night, and the first house we went to for trick-or-treating (our neighbor and dear friend, thankfully): Excuse me, do you mind, can I use your bathroom?

At the second house, and all other houses: I don't like chocolate.

Overall, Halloween was a success at our house, but affected nonetheless by autism (and I don't mean that negatively this time). One year ago, he had to be prompted to say anything while trick-or-treating, so his un-filtered speech shows huge progress in his social speaking, though this is a problem that we'll likely have to deal with for a long time to come. His poor endurance meant a short night of trick-or-treating for him, and his candy was left in the car for hours without him even thinking about it (I'd say this is a plus for autism and I think all kids could benefit from caring a little bit less about how much candy they can get). Fortunately, we planned ahead and the girls each had plans with friends so that they could fully enjoy the night.

After confirming a few times that Halloween is over, we are on to new and more confusing times, like why is it snowing when it isn't winter or Christmas :)

Friday, October 24, 2014

The Yellow Belt Story

     Evan earned his yellow belt tonight after many months of working with the most amazing karate instructor, Mr. Van, who is truly gifted at what he does. Evan enjoys his private sessions, though will no longer go to group classes; I think this is because it is so much more difficult for him to understand what is being asked of him when he is not getting that one on one instruction. Anyway, he finally made it to his first belt test, which he reported to me was "super easy" but he "needed to get a drink".
     Jayme and I decided beforehand that if he passed his belt test, that we would let him choose dinner and/or a treat to celebrate. Evan chose to go to Blue Fin, our favorite Japanese restaurant. Now, we go to this restaurant a lot (too much, actually), and 80% of the time we follow it up by stopping for ice cream on the way home. So, after dinner I asked Evan what he wanted to do next to celebrate, sure that his answer would be "get ice cream", since that is our routine. I was a little taken aback when he didn't answer me right away, and I could tell he was thinking. Here is how our conversation unfolded.

Evan: Get cough drops.
Me: What?! You want to get cough drops?
Evan: Yes.
Me: Cough drops? You want to get cough drops to celebrate?
Evan: Yes.

Evan begins to fake sneeze...

Evan: Boy, I sure am sneezey. I really need cough drops.
Me: Cough drops are for coughing, not sneezing.
Evan: Maybe I need sneeze drops.
Me: Do you want to go to the store with Daddy to get cough drops?
Evan: Yes.

     We split up so that I can stop to get ice cream, and Jayme takes Evan to the drug store, where he fake coughs through whole store until he gets a cough drop. While sucking on a cough drop, Evan begins to tell Jayme about the nurse at school who gave a boy in his class a cough drop. Ah...the pieces fall into place. Sort of. How did this thought take over his brain after dinner and essentially hijack it? Really, this is a very weird way to celebrate. But, o.k., we are used to weird, so we just rolled with it.
     There is an ice cream sitting in the freezer should Evan decide to eat it. I don't expect it to get eaten tonight, though, as Evan just had his second fake cough attack and is now sucking on a cough drop. I'm laughing as I'm writing this because it's so crazy it's funny, and I've said it before: I can't make this stuff up.
    

Wednesday, October 15, 2014

There Is a Storm Brewing...

     Call it my superpower, but I can frequently spot a tantrum brewing a mile away; yesterday was one of my best calls yet. I picked Evan up from school and he seemed happy. We made it to the car, which he entered without trouble, and I handed him his smoothie. He was still happy and talkative, but then sat on the arm rest of his seat, not in his booster, and asked if we could wait in the parking lot so he could drink his smoothie. I answered yes, but I knew in that moment that I was headed for trouble. I immediately started time calculations to see how long we could sit in the parking lot before I had to get the girls off the bus. 25 minutes later and Evan was still happily sitting in the now empty school parking lot, but we had to go...here is where the trouble began.
     I actually have 3 videos from my 10 minute car ride home, during which he was raging. I've actually decided not to attach them. They all show him screaming like crazy and hitting the seat in front of him and the window with a stick; what they don't show is him dangerously thrashing in his seat, him sticking a plastic knife into his side (I hope this was an attempt to break the knife and not hurt himself, but I was watching him and I honestly couldn't tell), and him throwing the knife at me while I was driving. We are lucky in the sense that Evan mostly only tantrums in the privacy of his own house or car, and though I think seeing one would be quite eye opening for anyone who hasn't experienced this kind of rage, I think it best that we let these episodes remain private. My Mom was witness to one and it left her shaken and in tears.
     Evan's rage continued for 10 more minutes once we returned home. (I did, by the way, have to call my neighbor to get the girls from the bus - thank you dear neighbor!!) I finally put him on the floor for some pressure after he knocked over a drum set, threw the matching chair, and was on the prowl for more things to destroy. He perked up when his behavior therapist arrived at the house, but was difficult for his entire session and remained on edge for the rest of the night, retreating into the couch cushions when I told him to stop licking me. Typically, we try to draw him out during the times when he shuts down (like when he buried himself in the couch), but I knew that bedtime was still several hours away and I needed a mental break (big glass of wine...and, oh...dinner too). I did eventually go to him, where he spent the next 45 minutes attached to me on the couch.
     An afternoon like this leaves me mentally drained and exhausted and barely functional. Added to my sense of being overwhelmed was a lengthy discussion with his cognitive therapist earlier in the day regarding the deficiencies of public education for guys like Evan (don't worry, this for sure will be a blog post in the very near future). These are days that you can't wash away so easily...they stick with you...they consume your thoughts when you run (thank goodness for running though, as it is good processing time for me). When Evan is having a great day, these are the days that are always in the back of my mind, for I know that with the high highs come the low lows.
     It's almost funny - when you look at the picture below, or if you had passed him in my car, I don't think anyone but me (and maybe Jayme) could have predicted the rapid deterioration in our afternoon. There are some people who deal with tantrums like this day after day after day after day...and I don't know how they do it. I think these situations are the ones that connect the special needs parent - you truly cannot understand the difficulties of these situations unless you live them day in and day out.
     Because, of course, I can't leave this without a positive spin, I am again incredibly grateful that I am writing this from the experience of the MIDDLE of the spectrum, that he can scream at me "YOU IDIOT" because that means he is using his words, and that this is NOT our everyday life. And thankfully, because one should only drink so much wine and eat so much ice cream, today was a much better day :)

Monday, October 13, 2014

Back Again

     We spent the weekend at our family farm, and guess where Evan ended up? Yep, just hanging out with Grandma Grace and Grandpa Bill (with many less questions this trip, thankfully). There is no real "autism" story here, though I've known no other children in our family as happy to hang out on a gravestone than Evan - o.k., I've actually never seen any other children in our family do this. He and I sat here for a good 30 minutes, him communing with his great-grandparents, me enjoying the weather and beautiful views. I had the thought, though, that when I am dead and buried, may my great-grandchildren relax as peacefully with me...

Tuesday, October 7, 2014

Conversation of the Day

     A little backdrop for you...Nana Deb is coming over (Jayme's Mom) and I tell Evan this after school. Also, Evan is obsessed with Star Wars and knows that Darth Vader got burned and "joined the force" (died). Yesterday, Evan told his behavior therapist he was going to burn her when she joined the force - this, I'm sure, was a compliment. She nicely told him that it was up to the person who dies if they are burned or buried, and did not call social services (which I appreciate).

     Back to today:

Evan: Nana Deb is old.
Evan: Is your Dad old?
Me: Yes.
Evan: Is your Dad died?
Me: No, my Dad is Grandpa Tom and we are going to visit him on Saturday. (Remember my earlier post about this topic?!)
Evan: I'm going to burn Nana Deb.
Me: Well, you'll have to ask her if she wants to be burned or buried.

     One hour later...

Evan: Nana Deb, what was your Mom and Dad?
Nana Deb: We called them Nana and Eli.
Evan: Did they get burned?
Nana Deb: No, they were buried.
Evan: Do you want to be burned or buried?
Nana Deb: Turns to look at me with the funniest expression on her face; I had not prepped her for this conversation :). I want to be buried.
Evan: Doh!!

Take home message: if Evan says he is going to burn you, then he must think you are pretty awesome, just like Darth Vader. No, not your typical little kid conversation, but - oh - this world is pretty hard to figure out in his brain. And shoot, this was an entertaining conversation :)

Sunday, October 5, 2014

There Is A Boy In There Somewhere

     Oh, it's been quite a quirky autism weekend. It started with a failed birthday party attempt on Saturday that Evan recovered from quickly but left me deflated for the rest of the day. Turns out that Pump It Up is not a comfortable place for Evan; I had predicted that, but thought we would last more than 10 minutes, and it was as long as 10 minutes because I pushed him a bit to try it out - he was crying and banging his head into me within about 1 minute of entering the building. Hats off to the staff member who, upon seeing Evan struggling, asked me if I would like the music turned down; not one place or person has ever asked me that before. Many thanks too, to the Mommy friends who asked if there was anything they could do to help - I appreciate that a million times more than pretending that a meltdown was not actually happening in front of them.
     Today has found Evan easily angered. The picture below is of him secluding himself after one episode. As I write this, he is in the same spot yelling "idiot" because he is mad that I didn't let him stand unassisted on a theraball in the kitchen. I know - I'm the worst kind of mother.
     We had a great example on a nonsensical conversation today too. Evan was asking if we could go to the zoo, and I responded that it was too late in the afternoon. This is what followed:
Evan: After what?
Me: Afternoon.
Evan: After what?
Me: Afternoon.
Evan: You missed a spot, you cut off the top, and you said afternoon!
Me: ????????
Perhaps this could be some crazy line in a Dr. Seuss book, but it wasn't said in a sing-song, rhyming kind of way. I just let this one pass in the knowledge that whatever he was thinking about or trying to process in his brain was unreachable to me at the moment.
     This past week was not without it's successes though, one of which was Evan's third ever poop on the potty (the first one in 3 months)!! For anyone that is keeping track, Evan is 5 years and 10 months old, and - this should be easily understood by everyone - those days that I'm changing 3-4 pair of underwear (like today) leave me weary. And poor. Underwear gets expensive.
     Complacency does not have room in a conversation about autism. Struggles are daily, some worse than others, and I'm obsessively watching and analyzing Evan's behavior. He has recently started tongue clicking...I think I'm the only one that has noticed, but I have to pay attention to it in case it is an emerging autism behavior. His obsessive sniffing continues too, and now he gets mad at Lily in the mornings because he doesn't like the way she smells (I have to chuckle at this one).
     Anyway, I've written long enough and have to leave my little blogging escape. It is time, after all, to get the kids showered and get myself and Evan out of last nights pajamas and into clean ones :)

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 digress...red 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

**BRAG WARNING**

     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...

http://blog.theautismsite.com/sensory-overload-simulation/?utm_source=social&utm_medium=autaware&utm_campaign=sensory-overload-simulation&utm_term=20140923

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 moment...it'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 :)

Thursday, August 28, 2014

Popcorn and Chocolate Milk

Yep, this is the time this morning that I was making popcorn and chocolate milk for Evan. He fell asleep at 5:30 in the evening after a very busy day; he woke up around 3 AM, at which point I had to change him into his pajamas. Then, he went to the bathroom (Jayme left our room around that time to seek quiet in Evan's room - Evan is currently sleeping on a mattress on our floor). I knew a request for food would be forthcoming, and sure enough at about 3:40 he asked for popcorn. When he was done with his snack, he climbed back onto his mattress and was probably asleep again sometime around 5. And, because who needs sleep at my house, the cat woke us both up at 6:15. This kind of thing is happening every couple of weeks right now, and while I try to see the positive in most cases, I'm struggling with what the silver lining of this issue is. It does benefit our economy because there will be lots of coffee drinking at my house today, so there is that. ZZzzzz.....

Tuesday, August 26, 2014

Life's A Beach

     Like most of the rest of the North Shore, I took advantage of the beautiful weather and went to our favorite beach today. I have to assume that outings like this will end in disaster and prepare myself mentally for a tough day. I used to take the kids to many places...the zoo, aquarium, swimming, hiking, etc., but it became so difficult around the time that Evan turned 3, that I really cut back on doing things with them. It's been o.k. for Evan, as more often than not, his days are filled with therapies, but I have ever-present guilt about letting down the girls. They'll never remember all the things that I did with them when they were little, but they'll remember all the things that we don't do as they age...bummer it has to work that way, but we try to do fun things with them when we can. Compared to my childhood (that is worth it's own blog), they have an amazingly privileged life, so don't feel too bad for them.
     Anyway, the morning started off terribly, with Evan having a meltdown before we even left the garage because he couldn't find a bag to carry his new umbrella in. He will randomly attach himself to objects - his preferred items change frequently, but when he is attached to something, he gives it 110% attention. Larger items, like the umbrella, are much preferred by me to the smaller items, like Lego guys, that frequently lose pieces. I have literally spent hours of  my life in search of things that Evan must have before he goes on to his next task or leaves the house. Today, it was the umbrella bag...a thing that Evan felt was necessary to transport his coveted umbrella in, even though the bag in question doesn't actually exist. I managed to buckle him in his seat, trying to placate him by saying that we would find an umbrella bag (and hoping that this current need would extinguish itself before I actually had to find one). However, the tantrum continued to escalate to the point where he was violently thrashing in his seat, banging his umbrella around, and screaming "I HATE THE BEACH, TAKE ME INTO THE HOUSE, DON'T DRIVE THIS WAY!!".
     To be in the car with Evan during a tantrum is frightening. The girls jump and cower in fear; if Shayna is sitting next to Evan, then she has to lean out of the way of his fists and feet. I've had things thrown at me in the front of the car. His screams are deafening, and the sound of him slamming his body repeatedly into his car seat is sickening. Some day I'll catch one on video.
     Today, I had to stop at the Post Office to mail an international package for work before we left town, so before I even left my driveway, I was running through all the possible scenarios of how I was going to accomplish that task with Evan in his current state. Ultimately, I chose child labor, and sent Lily in with the package, custom form, and money to mail it for me. Fortunately, the ladies at the Post Office know me by name, so they recognized the package Lily was holding, took care of it without any problems, and had her out of there in no time. While she was gone Evan had unbuckled himself and was crouched on the car floor continuing to tantrum. When Lily came out, I picked him up, put him in his seat, buckled him, and drove on. In this instance, I'm lucky that Evan has poor fine motor strength, because when he is tantruming he cannot unbuckle the seat belt on his own.
     As we continued to drive, Evan became more and more quiet. We don't talk to him when he is like this as it tends to makes him mad; we just have to ride it out until he is ready to reengage himself with the family. Evan is spending hours every week learning about how to regulate his body, recognize what zone he is in (red zone =  bad news for everyone), and what tools he can use to keep himself in the green zone. I know he is hearing the information, though we've yet to see much overflow to real life situations. But, he has to start somewhere, so how surprised was I when about 10-15 min later he said,

Mama, I feel better now.

     And the tantrum was over. And, he went on to have the best beach day he has ever had.


Sunday, August 24, 2014

Be Quiet Already!

     Have you ever had a moment with your child where they talk to you incessantly, and you just want a quite moment and have to hold your tongue before you say out loud, "just be quiet already!"? I'm not afraid to admit that this has happened several times with my oldest (less so with my middle one) and I think is one of those parenting things that we all feel at times but don't want to fess up to. I'll come back to this thought in a minute...
     By Friday of this week, I found myself short tempered and really needing some quiet time. I couldn't put my finger on why I was feeling that way; the kids had all had a pretty good week, and though there are daily struggles with Evan, there had been no major incidences that really pushed me over the edge. So, on Friday morning I was driving with Evan...he was chatting away, mostly about Star Wars, and he would start every few sentences with, "MOM,.....". I was getting irritated. Then, he said, "MOM, one more thing....", and I had a realization that was like a slap in the face - I was getting tired of him talking to me and I wanted to say, "just be quiet already!". Let me type that again: I was getting tired of him talking to me!
     See, I've never felt that way with him. In fact, I spent hours in the car with him up until he was about age 4 having intense guilt because we never talked. There were no conversations, and any questions I asked would lead to silence from him, or a repeat of the question I asked. Remember all the talking you did to your babies before they could respond to you? Think about what you would do if they never responded. Some people would probably keep talking, but I found myself not talking; mostly out of sadness that there was never a response.
     Anyway, he is now 2 1/2 years into intense speech therapy, and most recently his home behavior therapy has been very language based. Evan's ability to stay on topic and follow a conversation, and his ability to respond appropriately within a conversation or to a question, has increased significantly. Don't get me wrong, he is far from having "normal" speech, and I find myself constantly "translating" Evan's language for other people. He will often say seemingly random facts at various times because he is thinking about something, or wants to say something but doesn't really know how to go about it, and then I have to figure out how what he says ties into the topic at hand. But, he is talking so much (and that is the first step, whether it makes sense or not, you first must speak) that I am getting tired of it! Ah! I'll justify this some by saying that it takes a lot of work and patience to get through a conversation with him, and by the end of the week I often find myself tapped out. However, once I realized why I was feeling irritated, I found myself in awe of being irritated...totally illogical, I know, but in my head I'm still thinking, "wow, he is talking enough for me to get tired of listening to him". Amazing.
     I can't end this without saying, again, how very lucky we are that Evan has the ability to speak. Not far from my thoughts are my friends that have children that are non-verbal. If you subscribe to the theory that you are not given in life more than you can handle, then know that these parents are truly superstars. While my afterlife should contain absolutely NO poop (nope, no good news on the potty training front), theirs surely is full of all the unspoken phrases like "I love you" that every parent should hear. I think I'm up to 4 times that Evan has said those words to me, and whether they were said spontaneously or not, each time is pure bliss.
    

Tuesday, August 19, 2014

Evan's Second Tooth Fell Out!

     Evan lost his second tooth last night; this time we were prepared, as it was clearly very loose (this is the tooth I assumed would come out first as it was the only loose one I knew he had). Evan was near the stairs at the time, and Jayme and I were both on our computers...Evan then said, "something fell out of my mouth". Ha! It had to be his tooth! Unfortunately, he pushed it out of his mouth, I think not really realizing that it was his tooth, so it fell on the stairs below. A short search later, and Jayme had the tooth!! Yeah! Under the pillow it went and all was good :)

Saturday, August 16, 2014

What is Evan's Superpower?

     While Evan was busy talking about Darth Vader's penis at dinner tonight (nope, not joking...and yes, we were outside at a restaurant where the kind people next to us pretended not to notice), the girls, Jayme, and I were all talking about exceptional skills that people with autism can have. This, of course, led us to talking about Evan's skills. First, I must say that I am writing this more as a memo to myself, so I won't forget this story. Second, I must note that because of Evan's language delay, we think that there is a ton of stuff happening in his brain that we are not even aware of. Because of this, it is hard to say what his "superpower" will be, because I believe he has one (or many), as certain things that he says or does, and the feedback we get from his doctors, lead us to believe that he is likely highly intelligent. One thing I know for sure that he is gifted with is an incredible memory; this will serve him well in the future, though now it allows him to fool others in creating an illusion that he understands everything that is going on, when, in fact, he has memorized certain routines and expectations and can act on them appropriately.
     So, here is my story that I don't want to forget: while we were driving along Rt. 1 South in Rockport, ME. last week, Jayme and I pointed out to the kids the area along the coast near the resort that we were married at. Fast forward about 3 hours, we were driving Rt. 1 NORTH, and Evan - at the exact correct spot in the road - said, "where Mommy and Daddy got married". What? Yes, after one trip down the road, he was able to identify the geographical location going the opposite direction, of a piece of information that was not spoken directly to him. This took Jayme only about 16 years to figure out, and Evan did it in one pass.
     What does this mean? Nothing much...yet...but I'm trying to remember when he demonstrates some of these extraordinary memory feats just to have the information for the future. Sadly, this probably happens more than  I know in his free play and conversation, but there are many things that only Jayme can figure out because it has to do with some obscure superhero fact that I know nothing about, so I tend just to play along. I wonder what the future will hold for this kid...

Wednesday, August 13, 2014

Evan Lost His First Tooth

     We are currently on "vacation". I say "vacation" because sitting in the dentist chair is more restful than this vacation, which is saying a lot coming from someone who has had a dental implant, 2 root canals, and has an impending surgical procedure for an abscess (I'm thinking light sedation is appropriate for this occasion, but that is a different story). Anyway, the weather is crappy, the sleep is terrible, we've yet to have a good meal, and then there is Evan. His behavior has been pretty good, actually, but he choked on some food last week (and threw up as a result) and so has significantly cut back on his food intake, which was not good to begin with. In addition, every time he eats, he asks someone if he is going to choke or if the food is going to make him throw up. Sometime he looks at me and says, "am I doing fine?", to which I have to respond, "yes, you are doing fine", before he will keep eating. We think he is having a food texture issue, and we know  he is having anxiety, and the combination is enough to keep Jayme and I preoccupied with concern.
     So, back to the reason for this post. Evan lost his first tooth! But, here is the kicker...I didn't even know it was loose and I don't know when it came out. Evan has a lot of anxiety about his mouth, so he doesn't wiggle any teeth and though I knew one was loose from some of the things he has said, I thought it was a different tooth. As I was eating lunch, I happened to glance over at him and notice that he had a hole in his mouth..."Evan", I said, "I think you lost a tooth!". He was confused about what that meant and was totally unaware that his tooth had fallen out. It took him a bit to look in the mirror, but he finally did and then proudly showed the rest of the family. We aren't sure where his tooth went, and we had to assure him that he would not throw up if he had swallowed it. It helps that Lily just lost a tooth 2 days ago, so we are sure that the tooth fairy will find him here. It's also nice that he is so dialed out about some things because he is not at all upset about his tooth being lost. I can't be sure that the rest of the day and the future loss of more teeth will go so smoothly, but I'm thankful for this first relatively easy transition.
     With the girls, I found the loss of their baby teeth sad as it forever changes their look and signifies (for me) the end of their early years. I'm not sure how I feel this time around. I find my expected feelings to be all jumbled when it comes to raising Evan. For now, I guess I'll enjoy  his remaining baby teeth and just be prepared for their unexpected loss. Bye bye tooth #1 :)

Friday, August 8, 2014

Above All Else, Be Kind


     Jayme just shared this story with me:
http://theconcourse.deadspin.com/dont-buy-all-the-pies-at-burger-king-to-spite-a-child-1617620956

     Here is what he wrote to me regarding this story:
"These reactions scare me. First, don't treat children badly for any reason. Period. That is not acceptable. Second, I don't want come off as someone on an unrealistic tangent but are you really so quick to judge a child based on a casual observation? As the parent of an autistic child it is my hope that when people see my son "having a fit" or "throwing a tantrum" they might pause for just a second to wonder if it is bad behavior or something else - and then quickly conclude it is none of their business either way - and certainly not deserving of negative retribution for whatever inconvenience it may have caused them."
     We are not blind to the reaction of others when we are out in public. I live in fear of someone acting like the jerk in this story, or doing something even worse, as I assume it is inevitable (and hope that I am wrong). We have dragged Evan out of areas kicking and screaming, have scooped him up off the floor of more areas than I care to count, have tried to shield his head banging into the booths of restaurants....in all of these scenarios, he looks like a bad kid - like a brat.
     I would have assumed he was a brat if he wasn't my child....until the day I understood that I don't have the right to assume anything. Because, things are rarely as they seem. And, maybe the jerk in the story enjoys getting revenge on a child, fictional or not, because he was abused as a child, maybe he just lost his job, maybe..., maybe...
     Awareness, Acceptance, Education - this is the war cry for those affected by autism. Maybe my kid is a brat, maybe I am a bad parent, maybe you could do things better than me. But, I simply ask you to entertain the thought that maybe you don't have the whole story or all the answers.

     I wear this pin whenever we go out to a crowded area:
If it causes even one person to pause and think, then it has served its purpose and it allows Evan to enjoy experiences with less of a chance of someone passing judgement on him. There are many things about autism that I want people to know, but this is one of the most important. If you only see the picture of Evan when he is disregulated, then you'll never get to know what an amazing, caring, loving, kind boy he is. Please, pass this lesson on....

Saturday, August 2, 2014

A Tribute to Daddy

     So, today is my wedding anniversary....yes, 17 long glorious years. I haven't given Jayme a good present in, well - probably ever. In the last year, birthday celebrations have not gone easily in our house, so I'm not sure what today will bring. Evan gets very upset when it's someone's birthday (like, tantrum upset); it's totally irrational to us, and we don't know how to get him out of it. He was this way with Mother's and Father's Day also, though he did at least wish Jayme a happy Father's Day. Evan also wished Jayme a happy Mother's Day, along with his karate instructor Mr. Van, and a few weeks later, Lily (nope, not to me though). I try not to take these things personally, but on days where I feel like I should be pampered, I'm instead having to deal with Evan screaming "it's NOT your birthday!!!!!". Fun times.
     Anyway, I thought my present to Jayme this year could be in words. You see, I can't imagine dealing with autism without having Jayme. We are a great team. He tags me out when I've had enough, he risks bodily injury to get Evan's energy out (Evan has sent him to the doctor twice...once to the ER with a minor concussion; these were not intentional injuries, but Evan, like most young kids, has no clue that he can actually harm someone), we laugh at inappropriate times because otherwise we would cry, he is a fierce advocate, and, most importantly, he just gets it.
     I remember when Evan was very little, and at the end of what must have been a rough day, we were talking about how tough Evan is and Jayme said, "at least he doesn't have autism". "Yes", I agreed at the time, "at least there is that". Well, fast forward a few years and here we are...
     I was just talking the other night with some other autism moms about how forward thinking we have to be, and how unsupportive most people are with that. By that, I mean that I can't be idle in my thinking of 'what happens next' with Evan, I have to think months and years ahead. I do this because the steps he needs to make it successfully to the months and years ahead are happening right now. I compare it to running a marathon: when I hit mile 10, I don't think "great job, I've run 10 miles!". I think, "o.k., I've got 16 miles left to go". This is how my brain works best, and while I celebrate Evan's achievements big and small, I have to constantly be moving toward his next goal. I love that Jayme understands this too, so while I can't make the school see my way of thinking (outside the box thinkers, they are not), or other people if we are trying to make future plans, it's nice to have the person sitting next to me support and fight with me with as much, and sometimes more, gusto.
     One of the other things that I don't take for granted is Jayme's love for Evan. It will be tough to be Evan's friend. He calls people stupid, idiot, and screams "I hate you!" at times when he thinks these things are funny and at times when he is very mad. Just the other day, Evan accidentally hit his cousin in the head with a rock; we all knew it was an accident, but because it involved crying and 3 girls yelling, "Evan hit XXX in the head with a rock!", Evan quickly fell apart and got angry (more accurately, we think he felt guilty and bad, but didn't know what to do with those emotions). As Jayme tried to tell him that it was o.k., Evan yelled "I'm going to punch you in the face!", and - thank goodness for the height difference - clocked Jayme in the arm. Well, as cute as Evan is most of the time, the ONLY other person that will love him as fiercely and as unconditionally through these hard times is Jayme. When he smells like residual poop, hasn't showered in 10 days, is sweaty and his feet smell (thanks to my families smelly feet gene), the only other person that will snuggle him is Jayme. And, it's o.k. - I wouldn't expect anyone else to, but knowing that there is another person that feels as deeply about him as me is comforting when I don't know where his path will lead.
     All this to say Happy Anniversary to my husband. I am thankful beyond words to have you by my side. I can't remember the vows from our wedding, though I'm pretty sure the gist was something about how life might not always be easy (and I might not be that easy to live with...no wait, I don't think there was anything included like that), but I am the person that will always be there for you, and you for me. And, Evan sure is lucky to have you for his Dad. XO