Dear Mr. Springsteen,

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. 

My go-cart kid is picking up speed

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.

What can be done about the weather?

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?

What do you do?

Learning by Doing

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.

How cool is that?

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!

What Happened In Between

Last year when we realized that our speech language therapist was not a great match for Oliver and, without any alternative, decided to quit getting speech services altogether, we took a giant leap of faith. Since then we found a wonderful professional and the resources to contract with her. Oliver has been seeing her twice a week for a few months and we're happy with the whole scenario. Thrilled. He isn't making any huge strides that I can attribute, exactly, to the work he is doing with her but he is calm, cooperative, focused and happy to be there. For the first time in his little life he is not totally and completely distressed about working with a professional in a therapeutic setting. So, we took a break and now we're back at it, so far so good, right? But what I want to make note of here is what happened during that in between time because, in my gut, I think it made all the difference between disaster and success.

We took a break. My kid couldn't talk and yet we took a break from speech services. Kind of counter-intuitive, right? Yes, I thought so, too on some level. But it felt right and sometimes you just have to go with your intuition.

During that year there were many times that I despaired over Oliver's almost complete inability to understand what we were saying to him. He got some of it -- the rote, everyday kind of stuff. But if I threw something new into the communication loop it was met with a deer in the headlights look. I remember one particular episode when we were working in the garden -- I had piled a bunch of cardboard in the corner and Oliver's job was to bring it to me as I needed it to cover the paths between the rows. He got the idea and was game for his part but it was slow going and at one point, when he was at the pile and I was in the garden, I called over to him and told him to bring both remaining pieces of cardboard with him. He didn't get it. I tried again and he still didn't get it. I used different words and still, he didn't get it. Finally, I had to go over to him, we worked on it at close range and finally he got it and carried both pieces across the yard, but I was distraught. I remember reading that parents of non-verbal children should be careful of what they say around that child because it is likely that they understand a great deal more than we might assume. But I'm pretty sure that was not the case with Oliver. Someday I hope to be able to ask him.

Because Oliver had such limited receptive language ability I had a lot of techniques for helping him to understand what my words meant. I normally kept him within arm's reach if I wanted to communicate with him. I made sure there weren't a lot of other distractions around. I used lots of gestures and facial expressions, and I kept it pretty simple. I also gave him lots and lots and lots of time to process what I was saying. It wasn't easy. I couldn't just call to him from across the room and ask him to do something. I couldn't be in a rush. I had to focus all of my energy on helping him to understand what I meant. But I did it and pretty soon it became my habit.

During that time when we took a break from speech therapy I learned to worry less. Looking back now I wonder if my worry grew less because his ability to understand was also increasing. There was no point in time that I can refer to and say: ah yes, then he started to understand. It was a slow, slow, gradual thing.

Today, I can't believe how well Oliver processes receptive language. Really, I find it so amazing. I can find ten novel ways to tell him something and he will always understand. I can ask him to get something from another room and he can do it. I can give him novel, multi-step directions and he gets it more often than not. And gradually, I've had to pay less attention to how I communicate. I don't have to get up and move across the room to where he is standing (something that makes me totally blissful since I DO like to sit down, read the paper and have a cup of coffee now and then!). I don't have to eliminate distractions like I once did and I don't have to wait nearly as long for him to process. And remarkably, I have even started using adverbs to describe things and have been amazed to see that it has helped clarify meaning for him. How great is that??!

Oliver is still verbal-lite as I like to say. He is a boy of few words, for sure. But his words are slowly, slowly coming more easily and his sentences are getting longer. And this kind of makes sense, doesn't it? How can you use language to communicated if you don't understand the very meaning of words?

I don't have a whole lot more to add, except that I feel like we are in a much better place than we were even a year ago. Our lives are starting to feel normal. I'm less anxious. We laugh more. Life has gotten gradually, easier. We still have a long way to go, of course, but somehow the journey is lighter.

And tomorrow is a speech therapy day.

Miles and Miles

I was feeling a bit glum the other day, I don't remember any more why nor do I think it matters. When Nik asked if I'd like to go for a bike ride with the kids I shrugged my shoulders and grabbed my helmut. Anything would be better than sitting with my gloom.

A minute into the bike ride my whole outlook changed. Oliver, I quickly realized, has got it. He's riding. He's using the brakes to slow down on a hill and to stop when we come to a signal or road crossing. He's standing up to put more power into his pedaling on inclines. He's staying as far to the right as he can manage. We still call out to him and remind him from time to time: slow down, use your brakes. ... but mostly it has become unnecessary. He's so aware of his environment, watching us, adjusting his actions to mirror ours. Cautious but in control.

And the best part? The look on his face as he rides along with us. Peaceful. Joyful. Competent.

I threw away his old tennis shoes -- the ones with the holes in the toes that showed he hadn't quite mastered the brakes. His new shoes are a size and a half bigger! This time I bought the really expensive Stride Rites (well, on sale) because I knew he'd be keeping the toes until he out grew them.

My boy turned seven a few days ago. And together -- on foot, on bicycle and in our hearts -- we've traveled miles and miles.

Working my children to the bone -- or, August at our house

August in the garden has kicked my butt, which is to say I have neither time or energy to write much these days. Let's just say I've killed my fair share of tomatoes. And just when I thought I was done, thought I couldn't bear one more basket of tomatoes looking me in the face every time I walked into the kitchen, I went to my favorite local farm stand and found that they were selling tomatoes for $14 a bushel. Do you have any idea how many tomatoes are in a bushel? I had to go home and google it before rushing back with cash in hand, then loaded 53lbs of tomatoes into the trunk of my car. I couldn't stop myself. I think I have a disease. I just have to say no to vegetables.

It has gotten that bad.

On the upside, we had our first day of "school" last week. We spent part of it at the river, part of it in the garden (you see, there are those tomatoes to deal with), and part of it at the art table. I had a momentary bout of panic when the school buses zoomed by our house each morning last week. We were still stretching and yawning into our pillows and thinking of blueberry pancakes. Its kind of odd, I tell you, when everyone else seems to be moving on to the next stage of life and here we are, still doing pretty much what we did the week before. I know that things will change for us as the season changes, when it is time to put in the garlic, carve and can the pumpkins and don heavier clothes. Still. I'm not entirely unruffled by it all, this sense of being removed from all the hubbub. I'm usually such a hubbub kind of girl.

On the up, upside, Oliver was recently evaluated by the public school system to determine his eligibility for special education -- a formality, really -- and I was so happy to learn that he is pretty much age level for the life skills portion of the evaluation. Needless to say, this was not the case at the age of three so I guess we are managing to do something right. The "something right" part is surely our focus on RDI, which encourages us to slow down and help Oliver (and Sami!!) to participate in just about everything that goes on around here. I swear that by now that boy could make the coffee and mix up the bread all on his own! Too bad that wasn't part of the test.

I have another post in mind about language -- how utterly rewarding real communication is!!! -- but I'll save that for another night when I don't have a bushel of tomatoes waiting for me.

In the meantime, I've got pictures to share.