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