In less than an hour, it will be Simon's eighth birthday.
I want to tell you all about how wonderful he is, and how every moment he has been in my life has made me a better person. How being around him is an adventure and how he is so sweet and silly and funny, even though he can be the complete opposite too. I want to share with you how beautiful he is, how his smile and laugh are infectious and how he loves to cuddle. I want to share all that is good about him and celebrate him on his most special of days.
But right now, I'm worried. I'm worried because Simon just realized today how soon school is starting, and he is afraid. And he is nervous. And he is sad. And he spent the day being very sensitive to everything, quick to cry, and quicker to be angry. And tonight, he couldn't fall asleep. Not because he was so excited for his most special of days, but because he was nervous about going back to school. And I just hate it.
I hate that he has to be worried. I hate that he is panicking. That he is anxious. That he is afraid. I hate that he is spending the night before his birthday not worrying about his presents, or the playdate he has in the morning, or the cookies we're bringing to karate, or the cake he will have afterwards. He is instead, the night before his birthday, worrying about school. About who his teacher is. About who will be his friend in class. About it all. And I hate to see him this way. If I could, I would take all his worry away. I simply don't know how.
I realized that though I wouldn't change anything about Simon for me, and love him more than I thought possible, there is something that, were it to change, would help him more than words can really describe.
And so, a birthday wish for my firstborn, for the baby that made me a mother and the smile that could light up a room...that you wouldn't feel so anxious. That you would know, as we do, that you are amazing. That you are brave and strong and really, the first best thing to ever happen to us. You don't have to be afraid. You can do this. We love you.
Happy birthday, Moon Man.
As promised, I want to tell you about our experience at Disney World from an Asperger's point of view. I'll cut right to the chase here: Disney rocks.
Prior to our trip, just like anyone visiting Disney, I did a bit of research. Unlike others visiting Disney, however, my planning included what to avoid. We planned to skip any character sightings, parades, meet and greets, and/or huge lines. Go ahead...start laughing.
The thing about Disney, though, is that they are really the best at what they do, which is keeping people happy. With information about a special guest services pass I could get for Simon, I entered the guest services building as soon as we entered the Magic Kingdom. I was so not disappointed.
At guest services, I explained that my son had Asperger's. I was immediately provided with a special pass to help alleviate the stress of lines. More on this in a minute.
Besides the pass (clearly a goldmine in itself), the woman I spoke to took her time, providing me with a special map that notated which rides might be too intense, dark, or otherwise frightening. She also pointed out several 'quiet' places for us to unwind if Simon needed to get away, the nurses station, and play areas for him to get physical. She was like a little Asperger's Angel, sent to me directly from Walt Disney himself.
With my new map (specialized for those with disabilities, or different abilities) and Simon's pass in hand, I felt like we were armored to enter the park. And let me tell you, I don't know what I would have done without both.
The day (in June) was excrutiatingly hot. Simon was off from the get-go. (Hot, overcrowded and overstimulating places tend to do that to him, not to mention us!) First stop for us? The Swiss Family Robinson tree house. Simon loves the movie and I knew (or thought I knew) that he would like the treehouse. And he did. At first. Then he noticed some discrepancies. Things in the treehouse that weren't consistent with what he'd seen in the movie. The higher we climbed, the more agitated he became. Which made what happened next all the better.
We decided a detour was in order. We went straight to the Pirates of the Caribbean ride, which I remembered from my own childhood as cold and not-too-scary. And we ran straight into a 75 minute line. So, as advised, we presented Simon's card to the staff, who ushered us immediately into a side entrance. We were on the ride in 5 minutes.
I have to point out here that Ed and I felt kind of awkward accepting the card. We felt like we were able-bodied people who were taking advantage. We felt, well, like frauds.
But then we looked at our child. Stressed, uncomfortable, and already prepared to leave the Magic Kingdom at 11:45 am, we knew that our reason, while not visible to the throngs of people casting us sideways glances as we brushed past them en route to the accessible-for-us side entrance, was just as important. Our son needed this accommodation, just as he needs his IEP. (I will point out that when he did opt to leave the park with his grandparents at 4pm while the rest of us carried on, we sent the pass with him and endured the lines just like everyone else.)
Disney, thanks to the unbelievable customer service and accomodations we received, was a great experience. It wasn't Simon's 'best day ever', but it was far, far, far from his worst, and he remembers it fondly. I can't thank Disney enough.
(Of special note: We received a similar card at LegoLand when we visited there. While they may offer one at Universal, we didn't think to ask...would love to know if someone else did!)
Photo credit: Old fashioned alarm clock / Toasto.com (click on picture for link)
I have this one really, really big fault. (I have many other faults, but we're just talking about this one today, ok?) Here it is...I am always late.
For as long as I can remember, much to the annoyance of my parents, then my husband, and now my children, I have been late. I am late for dinners. Parties. Doctor appointments. Meetings. My own high school graduation.
I ran late to my rehearsal dinner. And my wedding. And I've missed the ceremonies of countless married friends.
I am late going to bed and could easily be late waking up if my kids weren't so relentless.
I am one small step away from being late getting Simon to school, but so far, we've managed to creep in at the 'one-minute-left' mark more times than I can count. A miracle of epic proportions.
I don't want to be late, and I don't think of myself as the kind of person who is selfishly late...the one who doesn't mind making someone else wait, although I'm sure it seems like that to those left waiting...please know I am terribly sorry. I really do mind making everyone else wait. I think about it the whole time I'm trying to get somewhere. But it doesn't help...I simply don't get out of the door as fast as I think I'm going to.
Fast forward a whole lifetime of being late to having a child with Asperger's. As I'm writing this, I'm realizing it is actually one of our bigger challenges. Everyone is different, but for Simon, it really, really helps to be on time. Actually, truth be told, it helps to be early.
Take this example: this past weekend, our family planned to attend the benefit of a local child. The benefit location was close by, and the venue familiar. In addition, there would be kids there that Simon knew and liked. To make it even better, Simon has been to two benefits before, so he's already got the whole 'crowded auction event' expectation down. A family friendly no-brainer, right?
Wrong. Wrong. Wrong. And why? Because. We. Were. Late.
By the time we got to the benefit, it was in full swing. People everywhere were laughing, talking, coming over to greet us. The band was playing and kids were giggling with photo booth pictures of themselves. In case you are wondering, this is an Aspergerian nightmare.
While to me, it looked like a lot of fun, to Simon, it was total chaos and overwhelm. It was bedlam and anxiety. My guy fell apart quickly and quietly, begging me to just take him home. It was all just too much, and really, it was foolish of me to put him in that position.
The fact is, many times we know Simon's triggers, and walking into a room like that is one of the biggest. Had we been early, there when people were just arriving and everyone was finding their way at the same time, it would have been a different story.
The other sad fact is that it all could have been avoided. We could have...drum roll...been on time.
I try to do my best for my kids, and I like to think that I'd sacrifice whatever needed to be sacrificed for them. I'm thinking it may just be time to sacrifice something else...the horrible and lifelong problem of being late. Really, isn't it the least I can do?
One of the characteristics of Autism and/or Asperger's is a supposed lack of empathy. And on many levels, I can agree with that sentiment. Simon most definitely thinks of himself first. Case in point....if Ruby gets hurt and is screaming hysterically, Simon will completely bypass her to ask if he can have a snack, play a game, watch a show, etc. Since he's only seven, we're not entirely sure how much of that is just age-appropriateness and how much is Asperger's, but I'd wager that it's 50% of each.
It's not below him to say something truly awful and thoughtless like, "Well, at least it's not me," when he hears of a devastation that's affected someone else. As parents who value the characteristic of empathy in others, this is often our hardest nut to swallow.
In other instances, however, Simon can be almost shockingly attuned to the people and events around him. When he knew that his friend, Abby, had surgery, he was gravely concerned. And after seeing his cousin, Kevin, in a wheelchair, Simon often asked (and still asks) after his recovery. When our dog, Roger, got sick, Simon was beside himself.
And so my own personal experience with Asperger's, empathy, and the potential lack thereof is mixed. Just when I think I have my son figured out, he goes and surprises me again, with a sentiment coming from one of two extremes--either detached and cold or mature and caring. It reminds me, time and time again, that although the 'hard' can be really hard at times, the good is so, so good that it verges on miraculous...
I've been really worried about Simon lately. And I know that I am always worried about Simon, and that it's something that sits with me even on our most carefree days. Lately, however, I'm worried about him in a new way--I'm worried that he is figuring out he has Asperger's.
Only seven, Simon is seriously concerned about being different. When I explain that not only is everyone different, but that the most inventive, creative and powerful people in the world are usually more different than their peers, he responds, "Oh, no! I am different." He's a smart cookie, that one.
So tonight I watched an episode of Parenthood, one of my very favorite shows. In it, Max Braverman, a character with Asperger's, runs for class president. I couldn't find a clip, but here is the text from his speech:
I’m Max Braverman, (adjusts microphone while audience giggles), I’m Max Braverman and I am running for student council present. If elected as president then I will bring back vending machines that used to be in our school. And that’s why you should vote for me. (More giggles). Also I’m very tenacious. It means being very persistent. I am like this because I have something called Asperger’s. Having Asperger’s makes some things very difficult for me, like looking people in the eye or saying hello. So I don’t do those things very often. Some things also come very easily to me because I have Asperger’s, like being smart and remembering almost everything. Also it means being tenacious. And so I will be tenacious about the vending machines. Another thing about Asperger’s is that I always keep my promises. So when I tell you that I will bring back the vending machines, you can believe me. Some people say that having Asperger’s can sometimes be a bad thing, but I am glad that I have it because I think that it is my greatest strength.
And of course, on the show, he wins! And even though it's a show, and it has to have the 'just-right' ending, and maybe it's less likely to happen in real life, I love it. I love the speech. I love the sentiment. I love that the writers of the show can look at something like Asperger's and see it as a positive thing. And I guess I'm hoping that the more people look at Asperger's the way they do on Parenthood, or the way I look at it, then the better the likelihood is that when Simon does learn about his diagnosis, when he gets confirmation that he is, in fact, different, he will know it's something to celebrate. He will know that he is wonderful, unique, and brave. He is amazing.
It reads, "How I love your gorgeous heart".
So. First of all, this blog is in no way a political blog. While I have my own beliefs, this isn't the forum for them. The only politics I'll be talking about on here will have to do with special education laws and/or arts in schools.
With that said, I'm a HUGE proponent of voting. I'm a firm believer that you don't earn the right to complain without utilizing your right to vote. (Ok...that was my preaching...I'm done now).
The problem for us right now is that while we are leaning towards one candidate, we don't want Simon to have a preference. Don't get me wrong...we love the fact that Simon is interested in our government. In fact, Simon has voted with me several times and he's really into it. It's super cute!
But he's also gotten really upset. He was absolutely crushed when he realized we couldn't vote for George Washington. And while it seems funny, and sweet, and innocent, it's also tough, because he is seriously invested in his expectations of fairness and goodness, and he's got some strong opinions about who is the best person for the job.
We really don't want him to spend four years feeling angry about the way the election turns out. Because things are so black and white for Simon, it will be hard for Simon to be on the side of the non-winning candidate. And while it's a good lesson to learn, we'd rather that lesson be taught on a less grand scale, at least at this point in time. After all, how many school lessons have to do with your local freeholder as opposed to the president of the United States?
And so, in our house, this year at least, we are cheering for both camps. And I'll tell you this...it teaches you something. Rather than focusing on the benefits of one candidate versus the other, we are forced to espouse the benefits of both sides. We're hoping that this positive and neutral stance helps Simon adjust to whomever becomes president in November. You know what? It might help us too.
Sometimes, I think I'm so attuned to Simon's feelings that it's uncanny. And other times, it's like I've completely forgotten what it's like to be a kid.
Last week, while having a discussion about all of the reasons he doesn't think he should have to go to speech therapy at school (he has officially won this argument, at least temporarily), Simon said something that made me pause. After I said to him, "Simon, lots of kids take speech", Simon replied, "Mom, I'm starting to think I'm not like all the other kids. I'm different."
And right then and there my heart broke.
Because while we haven't shared Simon's diagnosis with him yet, he knows. He knows that he is, in some way he can't describe, different.
To me, different means unique. Special. Meant for great things! Maybe a little spunky, or funky, or quirky, all things I consider good qualities. Because the fact is, I'm a grownup. I appreciate people who have multiple facets to their personalities. Who have a good sense of humor. Who have deep interests. I appreciate people like Simon.
But then I remembered...different isn't a good thing to a first grader. Or a second grader. Or middle schooler. Or maybe even high schooler or college student. Different is scary. Different isn't status quo. Different is poked fun at, teased, and bullied.
And it's not so hard to remember, is it? Any sense of belonging comes from community, and with community comes something in common, some form of sameness. Simon is realizing that he has differences...that he isn't exactly like his peers. That there is the possibility of him standing alone.
As a mother, I'm terrified of this. The irrational part of my being wants to protect him forever and help him fit in. And this is pretty much what I spend my time doing. And I will continue doing it, too, because friendships are important, and happiness is important.
But I think I need to spend some more time explaining to Simon why different is good. Why different is how new ideas are discovered, inventions are created, theories are debunked. Different is Bill Gates. Different is Albert Einstein. Different is Anna Quindlen. Different is so many, many people we admire and look to for inspiration and expertise.
The following short video is a quick reading by author, Kelly Corrigan. It's called, I Dare You. And in it, she talks about the embarrassment or self-consciousness that 'kicks in around kindergarten', and how it may take a lifetime to get rid of it. My first impression was that it had nothing to do with Simon, or Asperger's, or being different. But I was wrong. It has everything to do with being afraid to stand out, being afraid to take a risk, and being afraid even of being a success, all because we don't want to be different.
Different is daring. Different is brave. Different is, as frightening as it can be, a very good thing. Different is you, Simon. And I wouldn't have it any other way.
If you've been reading this blog, then you know that several months ago (as in before Easter), we introduced Simon to the Star Wars series.
It was something we seriously considered before doing because we knew that it was (a) kind of violent and (b) people died. Most times, these characteristics would prevent us from letting him watch something, but it was Star Wars. And kids kept playing it, and Simon didn't know who any of the characters were, and would get upset every time he couldn't figure out the 'rules' to the game.
One of the other main reasons we let Simon begin watching the series--besides the fact that everyone was playing it--is because, unlike Simon, Star Wars is not very black and white. It's hard for Simon to see the 'gray' in anything, but Annakin Skywalker is all gray--he starts out good, becomes bad, only to redeem himself in the end. It's a big challenge for Simon to comprehend something like this--actually, it may be challenging for anyone to understand this!
Needless to say, by the time we finished the second movie, we had lost him. He was crushed, devastated, and horribly confused because he knew Queen Amidalya was going to die and that Annakin was going to become Darth Vader and he simply could not tolerate it. It was a disaster, and we vowed to ban the movies from his repertoire. And we did.
Simon approached us asking to watch the fourth movie in the installment, wisely choosing the skip the third, which was the one we thought would be the most troubling.
So we did it. We thought he could handle it. We thought it was the least crushing, and the least confusing of the movies. And he was so excited. So we did it.
And? Well, I think we're ok. There were a few moments that had us all on edge--when Ben Kenobi told Luke that Darth Vader had killed all the Jedi (a devastating possibility to Simon), when Luke's aunt and uncle were killed (he knew it was happening and so closed his eyes), and when Luke's friend's plane was blown up (we lied here...we said he hit the eject button). It was the one that I least expected that most upset Simon...it was the moment when Han Solo takes his award and leaves.
Han Solo is Simon's favorite character. The fact that he would just leave was so disappointing to Simon that he gave me his Han Solo minifigure and tried to go to bed. He was crushed to see his hero be such a well, non-hero. When Han Solo was redeemed, Simon was thrilled. And so were we.
We're hoping he sleeps through the night tonight, that he doesn't wake up obsessing over the what if's, the why's, the gray matter. We're hopeful. And we think he might just make it. We think we've got this one. Wishful thinking on our part? I hope not. We all do.
Simon with a very tolerant deputy police commissioner!
I was going to title this post, "The things I've come to love or hate since Asperger's came into our lives" but realized that Asperger's has been in our lives since we had Simon...we just didn't know it for a while. Since having Simon, our wonderful, happy, quirky and exhausting boy, I have learned to love (and at the very least, appreciate) things I was never interested in before. I have also come to despise some seemingly harmless things that can send Simon, in an instant, into a stuck and unhappy place. Here's what's current on our list:
Oh, how I love you...
- Army men (plastic figurines)
- Army men (real guys)
- Patient people
- Army costumes (on him, not you)
- Vegetarian chicken nuggets
- Tag-along bicycles
- Nerf guns
- Military museums
- Heavy equipment and/or truck shows
- Birthday party invitations
- Best friends
- Appreciation for quirks
So, what's on your list?
Please go away...
- Any grown up in a costume, particularly (today) the Penn Quaker from University of Pennsylvania
- The 'On-Demand' sneak movie preview
- People who think they are helping but who have done no actual research
- The news
- Last minute changes
- Kids movies where the mother dies
- Kids movies where the father dies
- Kids movies where the kid dies
- Groups of children
- Intolerance of differences
We all know that there are about a zillion reasons why exercise is good for us. But did you know that it's an added benefit for special needs kids too?
Take our most decorated Olympic athlete, Michael Phelps. Michael's mother, Debbie Phelps, used swimming as a way to balance out her son's ADHD. She literally put him in the pool to give him an outlet for his energy. (Clearly, it was a great idea for their family).
For kids with Asperger's, particularly my son, exercise can alleviate anxiety and daily stress, but it can also be used to help overcome sensory issues that contribute to obsessive compulsive traits. Simon isn't particularly athletic, but he loves anything to do with the military. So when I notice any extreme in his mood (either good or bad), the first thing I do lately is pretend we're at boot camp!
Simon will do pushups, jumping jacks, squats, and will also run laps (he loves to swim, too, but without an indoor pool, we won't be using this one until next summer!). But our favorite, and possibly most effective exercise for calming him is the wheelbarrow. Why? Because it's hilarious! Not only is Simon seriously working his upper body, but he is usually doing it while laughing...a great combination. I notice an almost immediate improvement in his mood after any 'boot camp', but especially those where he has wheelbarrowed himself around our house for a while!
And while I can fill you in on anecdotal musings about this, science can tell you more. In the 2003 article, All Work and Some Play: Working the muscles helps regulate the brain, authors Deanna Iris Sava and Elizabeth Haber-Lopez state that heavy work can help a child's nervous system get in gear by helping maximize attention and behavior. They provide a heavy work activities list for occupational therapists which includes such activities as: sharpen pencils with a manual sharpener, carry groceries for mom, push or pull boxes with toys or books in it, pull a friend in a wagon, stack chairs, rearrange bedroom furniture, wash the car, do animal walks (crab walk, army crawl), push against a wall and erase the chalkboard.
So I'm looking for suggestions...are there any physical activities that are favorites with your child and how have they helped?
For us, for now, we're so happy to have remembered the old wheelbarrow exercise from our own childhoods. I'm only slightly disappointed that it isn't an Olympic event. Yet. You never know...