Sunday, July 27, 2014

Boston

     Jayme and I both went to college in Boston; it's a city we love and feel very comfortable in. We used to take the kids in the city frequently for lunch or dinner, but without even consciously thinking about it, we cut this habit way back. In order to make any trip successful, Evan has to be in a good space...his mood fluctuates 100 times per day, so hitting a window of opportunity is always tough. We tend to always go to one familiar restaurant in our town because it is comfortable for him, the food is healthy, the menu never changes, and most of the wait staff have been serving there since he was a baby. Sure, we try new things on occasion, knowing that the experience could end badly. Our last "new restaruant" was in Cambridge, where we met Jayme's aunt for lunch; Evan didn't eat and ended up laying on the floor as we finished our meal (I got over the grossness of that a long time ago).
     So, as we headed into the North End for dinner last night, I had my fingers crossed. We went early and chose a restaurant that had all of it's front windows open to the side walk (North End places are small and can be very noisy). Evan took a little nap in the car and initially woke up grumpy; I was able to get his headphones on in the bathroom  of the restaurant by telling him the toilet could be loud when it flushed, and he kept them on for the rest on the evening. This was an essential piece to our success, as it took one overwhelming sensation out of the equation, and once I was able to get them on, his mood improved. Of course, you can't please everyone all the time, so though the girls didn't love their food, Evan had a great dinner of pasta and meatballs. From there, it was off to a bakery for treats that we took to the water to enjoy the view.
     While I was initially skeptical about our evening, I am beyond pleased that it turned out so well. The whole family had a great time and after such a tough Evan week, it was nice to fit in an enjoyable and successful activity...I'll take 'em when I can get 'em :).

Friday, July 25, 2014

Pressure

It was a tough week this week...like a 'wear me down to the core' type of week. It's hard sometimes even to put into words what is so hard...Evan was just difficult. I think added to that is the fact that I now have someone around me 24 hours per day as I try to juggle working, running, (not) cleaning, (not) cooking, researching, advocating, etc., etc. And, oh, yes, it's summer vacation so there should be a little bit of fun in there too, right?

The pooping on the potty was, as I expected, a one time deal. One afternoon this week I changed 4 poops in a 2 hour time period, which is o.k. when you have an infant, but more than a bit frustrating when you have a 5 1/2 year old.

Evan is not sleeping or eating well, so there is that. He did sleep in his own bed last night for the first time in MONTHS! He has a new Star Wars obsession, so we played on that and got him a light saber night light (complete with sounds and changing colors), wall stickers and a new comforter set; it was enough to get him out of our room for one night (he has a mattress on our floor and is NOT in our bed, in case you were wondering!), so we'll see how long that lasts.

He has also needed a lot of deep pressure this week. There is a lot of talk about the validity of the diagnosis Sensory Processing Disorder, and I'm sure I'll talk more about that in a future post, but for Evan, it is quite real and he requires frequent pressure to help keep him regulated. He likes it best when it comes from me, so here is a pic of what that looks like:
It look just like a hug, which is nice, because I can give him some pressure without it being too obvious, though I wonder what people must think as I carry around a big kid. At home, I often sit on the couch to do this to save my arms and back, and sometimes we can roll him up in a blanket and make an "Evan sandwich" to give him the input he needs.

It's taken a lot to keep him on an even keel this week. Every week has tantrums, but when the tantrum goes on for a period of time, Evan "shuts down", which for him usually involves falling asleep because, we think, his system just gets too overloaded. One day I'll make a collage of all the weird ways he has fallen asleep, but this is what it looked like this week:
Evan is draped across my lap, where he threw himself. His head is on the chair near my hip, and his feet are across my legs and touching the floor. He slept through 2 times of me moving him (once to the couch, and once into the car). Sometimes he wakes up reset and happy, sometimes his tantrum will continue...your guess is as good as mine. Honestly, I already forgot what happened when he woke from this; he was grumpy, I think, but he spent most of the week grumpy, so it doesn't really stand out for me.

I have to say that yesterday and today have been a little bit better. This afternoon he tolerated being at my friend's pool for several hours without much difficulty. I only changed 3 poops while we were there :), but I was with friends drinking fabulous coffee drinks so I  powered through. I'm getting better at recognizing when I need a break from parenting (though Jayme may disagree, because when I've reached my limit, like Evan, I tend to stop communicating and just want to be left alone), so last night I met a friend for dinner, and spent this afternoon with a great group of ladies while the kids swam (and Evan sat in the sun with his long black pants on...Shayna panicked that he had a sunburn, but it was only red cheeks because he was so HOT), both of which helped me to,  mostly successfully, make it to the weekend.

What gets me to tomorrow? Sometimes, I don't know. Sometimes, I think it can't get much worse. My goal is  to welcome each day like this...
“This new day has greeted us with no rules; unconditional opportunity. Do not dilute the power of this new day with the hardship of yesterday. Greet this day the way it has greeted you; with open arms and endless possibility.”
Steve Maraboli, Life, the Truth, and Being Free
 ...and keep my fingers crossed that all goes well.



Tuesday, July 22, 2014

The End of My Social Consience

A Massachusetts based grocery store, Market Basket, is in crisis. There is a long standing family feud over the control and direction of the company and the employees have laid down sides, causing protests and empty shelves in the process. Local legislators are calling for a boycott of the company until the ousted former CEO is reinstated. Hmmmm....this could cause a problem, I thought. You see, I can only find Evan's yogurt drinks at - you guessed it - Market Basket, 5 minutes down the road. I have enough drinks for school this week, but if this problem persists, then I'm in BIG trouble.

This got me to thinking about how much my social conscience has shifted since having Evan. It didn't happen right away, but as life became more challenging I found myself shedding rules and my "for the good of human kind" philosophy with reckless abandon. Sure, I still make the kids brush with Tom's of Maine, only use soap and shampoo with ingredients that I can read, and clean with baking soda and vinegar, but after that the lines are really, really, blurry. I'm more wasteful, have less rules, allow more junk food, compost and garden less, and will sacrifice public decorum to ease my life.

I don't want to be this way, but I feel like I live in perpetual babyhood with no end in sight. Evan requires a lot of work on a good day; when in the house we need to know where he is and what he is doing at all times. When left unattended one might find your address stamped all over the bathroom walls because the address stamper works really well there :). When we go out, even if it's just for an errand, I need to make sure I have wipes, extra clothes, headphones, water, snacks, and whatever random object he has attached himself to for the day. I can't plan too many stops in one trip as Evan doesn't tolerate it...2 is usually my max. Frankly, I'm too emotionally spent to spend any extra time doing anything beyond surviving my day.

Not one too look past the silver lining, this way of living has taught me not to pass judgment too easily. I can no longer scoff at what others feed their children when sometimes Evan has marshmallows for breakfast. When you have a child that DOES NOT EAT, you will feed them anything, even sugar cereal full of carcinogens to avoid a meltdown in the store - end of story. Someone cuts a line? Despicable, yes...but maybe they are having an issue that we can't see. People are mean? We have no idea what their life is like, so let's not judge them. These are the lessons I'm teaching my kids these days: tolerance, kindness, flexibility. Hopefully they will absorb some of the other lessons I'm not so good at teaching right now, like conservation and the value of a dollar.

So, sorry folks...I'm crossing those Market Basket lines when I run out of Evan's yogurt drink. While my old self would have likely supported them 100%, my new self adheres to a somewhat irrational set of autism rules that demand survival first, happiness second, etc., etc. Social conscienceness falls  somewhere near cleanliness - just not so high on my list right now.

Wednesday, July 16, 2014

Potty Talk

O.k, I promise not to post so often, but OH MY GOSH, I have to share. (Beware, lots of potty talk coming up) For anyone that has followed our journey with Evan, you know that he is not potty trained for poop. We have been actively potty training him for 15 months and have even paid a private potty trainer to come in and look at our program. He was on and off pee trained starting last May, but last October he completely regressed and at home was in a diaper 100% of the time - this was at age 4 years 10 months. Did you know Pampers makes size 7 diapers? You can only find them at BJ's, if anyone needs to know.

In January, the professional potty trainer told us that if we wanted him pee trained, then he had to get out of diapers and into underwear and we'd just have to deal with him pooping in his underwear (maybe he won't like it, she said, and go on the potty...um, no...). So, off I went to Target to stock up on underwear. He had 2 accidents on the first day in underwear at home, but after that has been 100% pee trained, with the help of a prize bucket to reinforce the positive behavior; yes, we own every single little piece of crap sold in any toy store for less than $5 (my one kid you can't bribe with food).

The poop...oh, the poop...was a different story. Suffice it to say, I have easily bought over 200 pairs of underwear since January. I re-use when I can, but more times than not I just cut them with scissors and throw them away, ignoring all the environmental implications of his 5 1/2 years of pooping waste. There have been at least 5 of us actively working on getting him to poop on the potty, ultimately using Skylanders (video game guys) as his prize for going on the potty; he had a coveted guy picked out for months, just waiting...this tactic came with many tantrums, as we refused any new Skylanders so that we would have something to motivate him.

Well, two weeks ago, while we were on vacation, Evan took himself into the bathroom and did the ever so smallest poop on the potty. It was totally unprompted and we were thrilled; it was such progress. When we returned home, he immediately got his Skylander, then picked out another one for the next poop success. TODAY WAS THE DAY!! This was even more exciting for me, as it was a real, honest to goodness, poop. YEAH!!!!!!!!!!

It may be another two weeks before this happens again, but there is a light at the end of the tunnel. At 5 years, 7 months, he has pooped on the potty. That feeling of being sad that I don't have to change diapers anymore? Nope, never had it. Miss the baby fresh diaper smell? Nope, I'm immune. Feel happy for those friends that post about their kids potty training success...at age 2? Nope, I want to kill them. Alright, not really, but it makes me sad and leaves me wondering if they appreciate how good they have it.

So, I'll end this entry by wishing pooping success for everyone, young and old, and by treating myself to a congratulatory ice cream (o.k., I'd probably eat that anyway, but tonight I'll call it "celebrating").

Monday, July 14, 2014

Trying to Make Sense of the Senseless

Well, try explaining death to any child...um, yeah...not an easy job. So, as I tried to explain to Evan last week that we would be going to my parent's farm to bury my Aunt and Uncle's ashes in the family cemetery, I figuratively buried myself in a hole that I still haven't gotten out of. Our conversation really started by Evan asking who my grandfather is. The dialogue, repeated ad nauseam , is roughly as follows:
Me: My grandfather is dead.
Evan: Grandpa is dead?! (with panic)
Me: No, my grandfather is dead, but your grandpa, my Dad, is still alive.
Evan: Who is my Grandpa?
Me: Tom.
Evan: Where is your Grandpa?
Me: In the ground.
Evan: Why did he die?
Me: He was very old.
I shouldn't have said that...now every time I say something is old, he asks if it is (a) dead, or (b) going to be dead.

The morning after the first day of discussing this, our conversation went like this:
Evan: Who is your Grandpa:
Me: My Grandpa is dead.
Evan: Well, just go to the grown-up store and get a new one.
Me: Oh, boy....

So, as we arrived at my parent's on Friday, the dialogue took a bit of a twist:
Me: Here we are at Nana and Grandpa's farm.
Evan: (panicked) But Grandpa is dead!!
Me: No, not your Grandpa, Tom, my Grandpa.
Evan: Who is your Grandpa?
Me: Bill.
Evan: Who is my Grandpa?
Me: Tom.

We exit the car...
Evan: Let's go to where Grandpa is buried!
Me...I'm not sure which Grandpa he is referring to, but I comply in hopes of perhaps clarifying some of his confusion. Evan sees my Dad, and goes up to the cemetery, but I could tell that he was still trying to piece this all together. To help himself, Evan calls my Dad by his name, Tom, all weekend. Cute and funny, yes, but what it was demonstrating to me was that he needed something in his mind to differentiate between my grandfather and his...using the word 'Grandpa' instantly triggered a confusion and a repetition of the above conversations. Evan then spent a significant part of his time outside up at my grandparent's grave - just hanging out.

Evan's brain fascinates me. Now, I realize that death is a tough subject for anyone, but these repeated conversations gave such insight into how abstract thoughts are just so difficult for him. He desperately wanted to understand and tried hard to remember what I had told him. Memory is stored differently in autistic brains, and so it was clear that he was repeating some things in hopes of pulling it to the surface. By Sunday, I thought we had it all straight, but when we stepped outside to go see grandpa's grave, can you guess what he said?
Evan: Grandpa is dead!
Me: Not your grandpa Tom, my grandpa Bill.
Evan: Oh, ya ya ya, you are right. (Said as if someone was saying, "Oh, that was silly...I just forgot")


The weekend was an overall success; Evan had a great time, and so did his sisters. But just as we were leaving...
Evan: Who is your Nana?
Me: My Nana is dead.
Evan: Nana is dead?!!!

And, so the conversation continues....

Thursday, July 10, 2014

The Beginning



Evan is our third child, born without complications after 3 miscarriages between himself and his youngest sister (I have three children but have been pregnant 7 times…if belly fat were like a tree, I’m sure you could count my rings J). I truly don’t give much thought as to how or why Evan has autism, but I do believe he was born with it (whether genetic and/or environmental in nature, we will never know unless we enter him into a genetic study…I like to blame all the McDonald’s Big Macs I ate while pregnant with him and , yes, you should laugh – that is meant to be a joke; a good sense of humor is key to survival most days). Evan was tactically defensive from birth, meaning that he didn’t like to be touched, and I mean REALLY didn’t like to be touched. I remember having constant anxiety when we were around people, because I would never know when he was going to thrust himself backwards (his self-defense at the time) and I had to constantly be alert or he could have flung himself right out of my arms. I learned to read his cues, so that sometimes I knew that even Jayme couldn’t touch or talk to him; I can’t even explain what I see or sense from him, but I’m still able to pick up on it to this day. My sister nearly had her nose broken during one of these episodes, and we were always reluctant for him to be held by people not familiar with his reactions.
As soon as Evan could sit, he started banging his head into the floor. This progressed in intensity and I even mentioned it at his 15 or 18 month well visit (where I was told that this was a normal boy thing). He was nearly constantly bruised on his forehead and ultimately became to hit so forcefully that one good wack would trigger a bloody nose. Before he was diagnosed, I was always afraid that he would really hurt himself and require a trip to the ER – what would I say? At this point, he had many words but very little use of language and was echolalic (would repeat things he heard), so if someone said to him, “did your Mommy hurt you?”, he would have responded, “your Mommy hurt you”. This fear has lessened as he has gotten older, but the risk of him hurting himself or others remains quite high and his poor use of language makes him an incredibly unreliable source of information.
When Evan was 21 months, we realized that he knew the entire alphabet by site. Though I wish I could say that I taught him, the truth is that he taught himself from watching TV. We thought he was super smart, which he is, but we later learned  that this is actually one of the hallmark signs of autism, called hyperlexia.
At some point during his second year, he also started developing weird clothing habits. He spent about 2 months wearing shoes in the bath and in bed (thank goodness for Crocs), spent 9 months wearing only pajamas, and by the time he entered public preschool he was wearing only costumes (this phase lasted almost a year). You are probably wondering how a parent “lets” a child do this? Well, the alternative was head banging tantrums, and one can only listen to their child’s brain thunk against the floor so many times. He was clearly agitated and had heightened anxiety when forced out of his clothing of choice, and the battle to change this was definitely not  worth the effort.
Why wasn’t Evan diagnosed until he was over 4? I’ve learned that there are many assumptions made about autism in the public, and even in the medical community. Evan was always social, made good eye contact, could be engaged with people, and spoke many words. When he was 2.9 years, I did take him to our doctor though, with concerns regarding his speech.  But, Evan had the “normal” amount of words and I couldn’t adequately verbalize that it was his use of language that had me concerned, and so we left that appt. with very little accomplished. Evan was not having conversations – if you asked him a question, he would not respond or would repeat your question back to you. He was not verbalizing any emotions (tired, happy, hungry, sick). Frankly, he was becoming more and more difficult to parent (remember, he is my third child, so this was not my first time at the rodeo) and I found myself in tears more days than not. In hindsight, all of his symptoms collectively should have tipped someone off, and because of this, I have become active in a local program that allows medical students into people’s home to hear and see their stories…educating one future doctor at a time.
What really raised my red flags was the first time I went to volunteer at his private preschool (he was at the same place my girls went; I had serious reservations about sending him to school, but figured it would be good for him). The teachers assured me that he would be fine, though at first he would cry and withdraw to the point that he would fall asleep – what I know now to be his shutdown. I really can’t explain what I saw when I went into his class, though it was clear that he was not connecting to the other children the way he should have, but what it resulted in was me feeling literally like I was going to throw-up. I left his school in tears, feeling sick, knowing something was wrong but not knowing what it was or how I was going to help him. Jayme still wasn’t completely on board with the feeling that something was off, but after a horrendous Thanksgiving weekend during which Jayme had 4 days at home with Evan (right before his 4th birthday), Jayme finally conceded that we needed some help.
I’ll sum up the next year and half by saying that my life was consumed by appointments, consultations, and seeking help from wherever I could find it. We were spending over $1000 a month on therapies that he clearly needed, but were not covered by our insurance because he had no diagnosis. It took a brave therapist to finally verbalize to me that Evan had something more than a language “delay”…though this felt like a punch to the gut, it was the push we needed to get him diagnosed. He was finally evaluated at the Lurie Center, Mass General’s autism center, in the winter of 2013 and received his diagnosis of Autism Spectrum Disorder on March 6, 2013.
Here are some of Evan’s autism characteristics: significant pragmatic language delay (social language), rigid behavior, sensory processing disorder, low tone and weak fine motor muscles, he cannot infer, he is not potty trained (for pooping), eating and sleeping difficulties. I think I’ll touch on all these topics in later posts, but please…ask questions if you have any.
Thanks for joining me on this journey. It helps me to share. I know I’ve learned so much from other people, so I also hope that I shed some light on autism and help someone else who might be struggling with some of these same issues. Lastly, let me end this by saying that my husband and I are eternally grateful for Evan and the gifts he has given us. We are thankful every day for all that he can do and we realize, in the grand scheme of life, how incredibly lucky we are.

Tuesday, July 8, 2014

Am I Blogging?

I am...I think I am...should I? I've been sharing stories of my autism adventures on my personal Facebook page and my friends kept encouraging me to start a blog. I finally decided that I would try, but to be honest, this is way out of my comfort zone. I'm sure it will get easier (the administration of the site, that is), so please bare with the changes as my skills improve. I'll soon follow this initial post with our story from the beginning, but let me leave you with this thought...how do you take away the tears of your 8 yr. old after her brother has screamed, "I hate you!!" over and over with fists flying in the car where she is a captive audience? The reason for her tears? Actually, not for the reason I suspected...she cried that it hurts her to see him so angry, upset, and hurting himself. My tears today were for her - such a sweet, wise soul...my challenge is to keep her that way (and her sister) as we navigate this autism journey...