I had been waiting until I finished my RDI certification to reward myself with the purchase of a book I had been wanting to read for ages. So imagine my happiness when Sami, bringing in the mail, handed me the fat yellow envelope bearing Vicki Forman's memoir, This Lovely Life. Then, imagine my surprise and happiness when not one but two copies of the book slid into my greedy hands. A quick check of the receipt confirmed that I had somehow ordered two copies. I guess that's how badly I wanted to read this book. Anyone who knows Vicki through her writing on her blog, anyone who felt moved and inspired by the short life of her son, Evan, will understand why. Indeed, I'm only so many pages into the book and I can't wait to pick it up again each evening. If only I had a whole day to devote!!!
SO! A giveaway!
I am happy to pass on my extra copy to one lucky reader anywhere in the world!! Just leave a comment on this post and I'll randomly choose a name by Friday the 23rd of October.
And if you've never left a comment here before, maybe this will inspire you? Because Look! A Prize!! All you have to do is say "Hey!"
I had two bad Sundays in a row. Days when I had to talk myself out of crying. Days when I gripped the steering wheel and forced myself to think of all the good and positive things that we have going for us. On both of these days we went for long bike rides and that helped. I see Oliver holding his body straight as his strong legs pump and the bike sways from side to side beneath him. I watch as he languidly coasts on straightaways, steering his bike so precisely this way and that. I see him aware of and reacting to all the potential dangers in his environment. And I see the look of joy and competence on his face. He is capable, more so than I dared to hope a few short years ago.
But on each of these Sundays I also have had to witness Oliver struggle with even the simplest of social interactions. I see him unable to stay sitting through the circle-time song in the Sunday School classroom where I have brought the two boys and then crying out for the box of Legos that he has spied on the shelf. I see the other kids looking at Oliver as he vocally comforts himself, also seeing when I have to leave the room with him. I see them appraising him and thinking to themselves: there is something wrong with that boy. Later, during the closing prayer -- after hours and hours of elapsed time which only read as 30 minutes on the clock -- as I stand close to Oliver, quietly urging him to stay with the others, the girl next to him refuses to hold his hand. "That's OK," I tell her, "I'll hold his hand." And it is OK, I remind myself, he will learn and she will learn. And I have to believe it to be true because as I say goodbye to the Sunday school teacher and her husband I tell them: "See you next week!" in what I hope is a cheery tone. And she must believe me because she hands me a piece of paper with her phone number written on it and says "Call me. Let's talk about what we can do to make this a good experience for Oliver." I have my doubts. Lots and lots of doubt. But I will call her. And I will try.
I am a longtime fan of yours. My children have also become fans of yours since your CD, We Shall Overcome, is on regular rotation at our house. Because of you, my son knows all the words to Old Dan Tucker and can sing them too. This means a great deal to me because, you see, my son has autism and has a great difficulty speaking. But he can sing Old Dan Tucker.
I am writing to you because it has come to my attention that you plan to perform in support of Autism Speaks. Please, Mr. Springsteen,reconsider. There are many ways that you can benefit the autism community that do not involve supporting an organization that portrays children like my son in such a negative light. How we choose to talk about and portray people with autism is vitally important. When Oliver first received a diagnosis I did what many parents do: I turned to the
internet. Unfortunately, the images portrayed in the media -- including those created by Autism Speaks -- paint a very bleak,frightening picture. Consequently, the time after the diagnosis was a very bleak and frightening time for our family and it remained so until I found other words and other images, images of hope and
optimism and acceptance. These are the words that are important and these are the messages that will make a difference to individuals with autism and their families.
Mr. Springsteen, I hope you hear from many parents that feel as I do and I hope you will hear our words. Autism Speaks does not speak for my family!
Very Sincerely,
Me
*************
I was alerted to this upcoming benefit over here.
If you agree with these sentiments, you can also send a note letting Mr. Springsteen know how you feel, to: mlaverty@shorefire.com
It's too late to do anything about that awful Autism Speaks video but maybe we can still send them a powerful message.
Nik took the boys on their bikes to the park one day this week in the sometimes hard to fill time between dinner and bedtime. I stayed home to recharge before the brushing of the teeth, changing of clothes and the long bedtime ritual that comes with a child who has trouble falling asleep.
When the boys returned I asked Sami if he had a good time. He said that he did and that he met a new friend who lives just a block from us and that he had fun playing with the boy. I then asked if Oliver also played with this new friend and he replied: "No, he played with the older boys." The older boys? I wondered what that meant and later asked Nik about it and and he confirmed that Oliver played, although somewhat awkwardly, with some kids his own age. Nik and I were both somewhat surprised. I have seen my boy's increasing interest in other children but it is usually reserved for babies and children quite a bit younger than himself. This was most certainly a first.
Contrary to the advice of a great many experts, I have not been too pushy about putting Oliver in lots of activities with his same-aged peers. I don't believe that just by putting a child like Oliver with other children his age that he will magically start to understand how to interact with them or to model their behavior in any way. Maybe there are some children that this works for but with Oliver it would be like putting a go-cart on a speedway, the other kids are just too fast, light years ahead him. We've focused instead on helping him to understand himself in relation to family members, believing that this has to happen first, because this is how all children learn to become social creatures. And because we are willing to slow down enough that he never has to feel like a go-cart.
We home school but my house is a pretty socially-rich environment. Friends know that they can just drop by with their kids and hang out if they are looking for something to do. I'm the one people call when they need someone to watch their kids for an hour or an afternoon. So during any week, there is bound to be a time or two when it is a full house around here. Over the years I've watched as Oliver first completely retreated from visitors, usually to another part of the house altogether, then to maybe just another part of the same room. Lately, though, I've watched as he has moved with the pack -- always to the side but there nonetheless.
Towards the end of the summer I saw something new developing with Oliver. For the first time ever I saw that he was struggling to become part of the group. I watched as he watched children he knew well, studying the situation and then trying to join in, failing and becoming upset. I know that many a mother would find this upsetting, but for me it seems like a very big step towards learning how to relate to other kids. I honestly don't know if he will ever get there, the gaps are just so huge and the other kids aren't slowing down. But his desire is there and certainly nothing would be possible without that.
Last year at this time I wondered how we would do it all -- the RDI, the homeschooling -- I felt so completely off the grid and wondered if that is where I ought to be. This year I feel more confident. I see Oliver blossoming in ways that I was afraid to ever hope for. When I used to fall into that black pit of fear I would remind myself that Oliver was developing, not typically, but according to his own timetable. And the more time I spend being his mother the more I know this to be true.
If I were brave enough to go back through some of my old posts on this blog, I can imagine that I might be able to track some significant behavior issues and tie them in with the change of the seasons. We've had some rough moments in our little green house over the past few days. I hesitate to use the word rough though because in the scheme of things, the rough of today is just a blip on the radar compared to the rough of a few years ago. Last year we went through a particularly difficult period, in fact, at just about this time. The rough of today mostly looks like a super animated, can't sit still, coming out of his skin, Oliver. He is still smiley and happy, cooperative and game to participate in whatever, but -- whew! I am tired just watching him.
Today we went to the library. It was rainy and colder than usual and I just wanted to get out of the house. Plus, we don't get any TV reception and our stock of library VHS tapes (yes, our DVD player died) was almost two weeks old and we were in need of some new reading material. When we arrived we found that the childrens area was completely occupied by a group of adults with disabilities and their aides. Great, I thought: what perfect timing. The librarians were so occupied with this group that they wouldn't notice a young boy galloping around the young readers area. Or so I thought. A few minutes after we arrived I stood next to the librarian to ask a quick question, she answered me then glanced at Oliver, looked back at me and said: "Autism?" "Yes," I smiled. She smiled back so warmly that I quickly made a mental note to schedule all of our library visits for Thursday morning. Let's just say that some of the other librarians are not as warm.
We accomplished our mission at the library but it became increasingly clear to me that Oliver was sincerely struggling with some sensory issues. He galloped, he jumped, he hummed and at one point he even started flapping his hands -- something I have never seen him do before. Then, just as I was about to suggest that we leave, he ran up to a young, old order mennonite, woman and started hitting her. Not really hitting in an agressive way, but in a sensory seeking way that I've seen him do before. He takes both hands and claps them against part of a person's body so that the body is in between the clapping hands (strange picture, I know). Usually he does this to Sami's head! I have never really seen him do it to another person outside the family before.
After I apologized profusely to the confused looking young woman, I took Oliver aside and explained that it was NOT ok to touch another person like that. Then I asked him if he wanted to hug me. He said yes and gave me a hug that might have killed a small child. So I whispered in his ear: "Do you want to go outside and walk around." "Yes," he answered, "Outside." Then I asked him if he wanted to go home and he said "no," then repeated the word "outside." So we went and walked around, before finally collecting our things and heading home. The nice part about this is that finally, finally, finally we are at a place were we can have some back and forth communication that helps us find resolve. Also, he is mostly regulated these days so disregulation stands out loud and clear.
We're also having some minor sleep issues -- not bad yet, but he is having trouble falling asleep and wakes up way too early. Overall it is manageable but not ideal. I'm crossing my fingers that it doesn't get any worse.
I know we aren't the only ones to note the change in season or weather and corresponding behavior changes in our kids with autism. The question is what to do about it? Besides the obvious sensory helping activities, is there anything to be done?
Have I mentioned here that Oliver is a bike riding superstar? Yes? Ok, I know I have. But you can't stop me from saying it. And listen, every single time I get on the bike and ride somewhere with my kids my heart nearly bursts with pride and happiness. I can't help it. It just swells and swells and I have to marvel that there is actually room in my chest for it. I get giddy. I can't stop smiling. So I'm just warning that there will be more bike riding blog posts in my future. ..
We've taken the bike riding to a new level: commuting. Sami has pre-school three mornings a week and my boys and I ride over there together. It isn't far, just about a half mile, but we have to cross two very busy roads -- one of them 4 lanes. The whole thing causes me some anxiety: I'm just one but I have to keep track of two boys while watching for traffic. But the boys? Well, they are fantastic. They follow directions, they stay as far to the right as possible, they ride cautiously and smile the entire way there and back.
So anyway, we've been spending a lot of time on the bikes the past few weeks. But tonight, well, tonight did not go so well. Oliver is experimenting a bit with physics and likes to see how long he can coast without pedaling. He is also working on mastering some kind of trick ride where he takes his feet off the pedals and rides with them on the top bar of the frame. Makes me crazy but what can I do? He is a boy on a bike, after all. The coasting thing results in lots of falls or near-falls. And, if he does it while he is on the street and as far to the right as possible, it was bound to happen that he would Fall.Into.A.Car. And that is what happened. Oliver fell into a parked car. I wasn't with him but Nik tells me that Oliver jumped right up, hopped back on the bike and off they went. Nik was relieved that Oliver was OK and cautioned him to stop playing games.
Unfortunately, Nik was soon called back to the scene by an irate car owner who pulled up beside him and scolded about the hit and run. Yup, Oliver's crash left two, 6-inch long, scratches on the side of the dark blue car. Nik, very apologetic, gave the man his business card and told him to get in touch to work out the damages. Nik also described how the man became noticeably less angry after he asked Oliver a few questions and noted that he did not respond. He was silent for a minute or two while Nik looked over the car and then allowed how he might be able to fix it up so the scratches wouldn't be so noticeable. In the meantime, we're wondering if our insurance covers bicycle-car accidents.
At first glance, Oliver is just another boy on a bike. But look a little closer and you start to notice that there is something pretty remarkable about our little guy. Tomorrow is a school day and so we will saddle up by 9am as usual. I'll still remind both of my guys to keep as far to the right as possible, but also, now, a little to the left.
My boys have had the great fortune to have a bobcat in our yard for their very own viewing pleasure for most of this past week. Do you have any idea how long children, men and a mom can be totally occupied by watching a bobcat dig a trench? The kids and the men are undoubtedly just delighted by the great pleasure of watching a giant machine move mountains of earth. The mom, well, she mostly watched with resignation as seven years worth of gardening work got scooped up and dumped aside. The biggest downside is that I probably lost a couple hundred daffodil bulbs. The upsides: water pipes that aren't 104 years old and don't leak and the fact that my kids named me the coolest mom ever for turning our yard into a heavy equipment site!
