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 :)