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...
Dear First Grade,
It's been a long time since you and I have spent any real time together, but I remember you so well. I remember, first grade, that it was with you and my wonderful teacher, Mrs. Young--who was, like her name described, young and vibrant and enthusiastic and special--that I learned to read. And oh, thank you so much for that. I don't know if I've learned a single academic thing since then that had as much of an impact. I took what you showed me, and it started with "Today is Tuesday, October 6..." and have taken it so many places. You taught me to read, first grade, and I will always be grateful. Books are a big part of my life, reading is my actual job...where would I have been without you?
So we are going to meet again tomorrow, and I hope you remember me as fondly as I remember you. I know that I've changed a lot since we were last together, but I'm hoping that you haven't changed nearly as much as everyone says that you have. I'm hoping you are still wonderful, still fun. Still a place to grow friendships and a place to be safe. A place where it is ok to make mistakes but also a place to learn new things. And I really, really hope, first grade, that you haven't lost your sense of humor.
Tomorrow, when we get together, I will be bringing someone special with me...I will be bringing my son, Simon. And I am asking, so nicely, if you would please take care of my baby like you took care of me all those years ago. If you could please hold him safely in your arms and teach him all the things you taught me, and even more. If you could please be there for him as he navigates through you, and forges relationships, and faces challenges. I'd like to ask you, first grade, if you could please go easy on him, but I know that I need to trust that you will work with him like you've worked with so many of us before, and that, like me, he will be just fine.
I do hope, first grade, that you learn to appreciate his infectious laughter, his bright mind, and his relentless appetite for knowledge. I hope that you can see him for the wonderful child he is, and that even in our age, first grade, you don't forget to sometimes just be silly...Simon will be even better for it.
Thank you again, first grade, for the enormous gift you gave to me. I hope you and Simon get along, and that you have a wonderful, wonderful year together. I think we're ready...I'll see you tomorrow, old friend...
Ok. I admit it. I am a nervous wreck.School starts in one week for us, and it is a whopping transition. I'm guessing it is for most kids, but I can attest to the fact that it most definitely is for us. I try not to let my kids know that I'm feeling anxious, and instead, try to be proactive about the whole thing. Here are a few things I do to help ease Simon's transition into the new school year, as well as ease some of my own anxieties:1. Visit the school. A lot. Last year, pre-kindergarten, we took eight tours of school. It may seem like overkill, but it's what worked for us. By the time we had our kindergarten meet and greet, Simon was at least vaguely familiar with the building.
This year, since he's already had a year of school, we enrolled him in a summer program there, and so he's been at school about once a week all summer long. When school starts next week, at least the going
part won't be too much of a shock. Both years, we have tried to make it really casual, not pointing to things and asking his opinion about the upcoming school year, or even talking about the school year (and bringing on a big fat anxiety attack). Instead, we just walked around and talked about other, more usual topics, giving him simply a sense of familiarity.2. Make a book.
We didn't do this this year, as Simon is, as I mentioned, already familiar with the building. But last year, we found it really helpful. We made a book full of pictures of different rooms in the school--art, library, gym, cafeteria, computer lab--as well as some of the people he could count on if he felt nervous--his case manager, his school psychologist, the secretaries and nurse. We used our book a LOT and I highly recommend it when going to a new building. 3. Meet the teacher. We have been blessed, both this year and last, to have teachers who have sent introductory letters to the class. That introduction means a lot for Simon. However, we don't stop there. As soon as the teachers have officially been assigned, I send an introductory letter to our new teacher, explaining that Simon is really excited but also anxious. I let the teacher know about his diagnosis--there is always the chance they haven't seen the IEP's yet--and offer to provide information about both Simon and/or Asperger's. (I do NOT send it in this email, I just make the offer). Finally, I ask if we can meet. If the teacher is going to be in the classroom prepping anyway, they may not mind taking a few minutes to get a future student comfortable. Again, we have been REALLY lucky and blessed with amazing introductions so I'm not sure everyone will have this experience. 4. Start the routine early. Start getting on a schedule by going to bed, walking up, and eating like you would during the school year. Easing back into a routine early helps us from slamming up against that wall the first week of school. 5. Gather information. After sending my introduction letter to Simon's new teacher, I start to accumulate information for them. In the past, I have printed some articles from myaspergerschild.com, which I've found to be really helpful and not too overwhelming. I particularly like: Helping your Aspie's Teacher to Understand your Child Parents Letter to Teachers Parents Tips for Teachers Asperger's Critical Issues Teaching Asperger's StudentsAgain, I don't give all of this stuff at once, and I may not give it at all. I would never presume that a teacher doesn't already know about much of this or want to undermine their experience. However, I do have it on hand if a teacher requests more information or expresses interest in getting another perspective.Here's what I don't do...1. I don't talk about school all the time. He knows it's coming and I don't need to make it a 'big deal'. 2. I don't anticipate the fun things he will do at school. This has a tendency to seriously backfire.3. I don't talk about all the stuff he is going to learn. It just makes him more anxious. We find that a day-by-day approach to this is best to avoid panic and frustration.4. I don't read, though I love this book, The Kissing Hand. I have read it in the past and the results were disastrous, but this is just for my child. It might work for you.This is what has worked, and what hasn't worked for us. I'd love to hear what works for you in easing the back to school transition...the more ideas, the better!