Advanced "Welcome to Holland"

I had a rough day yesterday while Janey was at school.  It had nothing to do with her---it involved worry and doctors that don't call back and midlife frustrations and general malaise and so on and so on.  She came home and lifted my spirits immensely.  She had such delight in the everyday afternoon and evening activities---having some cheese as a snack, walking to the ice cream store, hearing music on the way back and dancing, seeing Daddy come home, getting some Chinese food for dinner---it was great.  She even made us laugh with a new phrase.  She asked Tony for a ride and he said "Sure!" and she said "Are you joking me?"  She was a delight.

And for a brief moment last night, as I thought about it all, I was thinking how although she is very different than most 12 year old girls, there are many parts of who she is that are lovely in their differences.  She loves us wholeheartedly.  When Tony got her off the bus instead of me on Wednesday, upon seeing me when I got home she gave me a huge hug, just thrilled to see me again.  She has fun with very small pleasures---a song she likes, a trip to the ice cream store or McDonalds, a video that she's seen over and over.  She doesn't long for what she doesn't have---she isn't asking for Ugg boots or a North Face jacket or whatever else is in right now (and those might be totally out---I don't know, and that's part of it!)  For a minute, I was thinking "it's a different life, but it's a good life!"

Then it hit me---wasn't that awfully like what "Welcome to Holland" says?  Welcome to Holland--a well meant story written by a kind and caring mother about her specific circumstances that has turned into something tossed to every special needs parents as a way of saying "Quit all your griping!"  Of course I am being a little sarcastic there, but that's often what it feels like, like a way those who have never lived the life can say "What's the problem?  It's not the same as most lives, but it's just as wonderful in its own way!"

And I felt angry, really angry.  I felt angry for many reasons.  The big one was that having an afternoon like yesterday with Janey wasn't something that just happened.  It has taken many years to get to where we sometimes are today.  It has taken the dedication of many people---Tony and me, yes, but also many other people---all the people in the Boston Public Schools who have worked with Janey over many years (and they are an amazing bunch of people), the doctors and psychiatrists who have helped us find what seems like the right combination of medications, Janey's brothers, the people in the Hyde Park community like our neighbors and store workers who are happy and excited to see Janey no matter how she acts, my friends, both those I know in person and those I have met virtually, who give me ideas and support and love, the wider autism community who has shared their experiences and advice----it's taken a huge amount of people and work and knowledge to get Janey to where she can have an afternoon like she did.  It didn't happen just by somehow arriving in the wrong country and accepting that I was in Holland and not Italy.

We like feel good stories.  We like happy endings.  What we don't always like is hearing that it takes work, it takes money, it takes resources, it takes tears and false starts and dead ends and heartbreak and sweat and dedication and so much more to get to those happy endings.  And they aren't endings, really.  I've read about something called the "end-of-history illusion".  We as humans often feel like the stage we are at right now is the evolved, end stage.  We see work and change and developments in the past, but we sort of assume the future will be steady, that we have done the work and now we just sit back and reap the benefits, and that is of course not true.  The future will hold as much work and as many changes as the past, most likely.

Our society is set up for people to travel to Italy, not Holland.  A trip to the special needs world is not just a different trip, it's one where none of the guide books help you, one where you have no hotel reservations, one where before and after the wonderful moments you might have, there are many times of confusion, frustration, fear and despair.  There are kind people in Holland, amazing people who do more than you would ever expect to help you, there are beautiful sights, but don't let anyone tell you that it's just another form of Italy.  It's not.

Other blogs

Today has been a tough day for me, for no external reason except being tired, which is my normal state, pretty much. I'm just feeling it all more than usual. For some reason, I started searching around for other autism blogs. I figured there must be some other ones out there that I could read that reminded me of myself and of Janey---misery loves company, I guess. But I couldn't find any. There are millions of autism blogs, it seems, and I KNOW there are a few other mothers with kids like Janey (and I am thankful every day for knowing that!) but the blogs were...well...let's do a list!

1. They were fancy. They had great graphics, and all kinds of pictures, and little statistics at the side, and awards, and animations and neat wallpaper and all kinds of do-dads. I am not good at decorating in real life, and I guess my blog reflects that.

2. They were upbeat. Not every post, but in general, they were cheery. They were forward looking, seeing great improvements all the time, excited about new approaches, thrilled about achievements, just so happy sounding. Maybe I am just a down person, although I have not usually been seen as such. But it seems like bloggers are supposed to be a lot more positive than I am.

3. They weren't afraid to speak well of themselves. I saw more than a few that had mothers that referred to themselves as "Super-Autism Moms!" That amazed me. I guess my Maine upbringing featured many reminders that you don't "show off" like that. If anything, you should always put yourself down a little, and it will be understood that you are doing that. But I guess that's not the way it's done in Bloggerville.

4. They had unified plans for the "battle against autism". They most all seemed to have picked a plan the day their child was diagnosed, and they work relenetlessly to put that plan in place. Whether it's ABA, or diets, or chelation, or intensive floortime, or whatever, they are wholeheartedly devoted to the single-minded goal of FIXING THAT CHILD! I felt like a huge slacker and a pacifist in the battle against autism.

5. Their kids were incredibly bright. So many blogs mentioned that---how their child at 2 could read, name all the presidents and elements and states, build rockets---you know I'm overstating here, but you get the picture. Their child was autistic, but not, you know, that BAD kind of autistic that is also retarded. Not that kind, but the so much more trendy high-functioning kind.

6. Schools, doctors, Early Intervention, society at large---they were all enemies, trying to do what they could to somehow deny their special child the help they needed. This wasn't universal, but it was out there a lot. It was them (their own family and others who agreed with whatever their "recovery" approach was) against the world. I love Janey's school, which is probably not the thing to do if I want to be one of those cool autism moms.

7. They DID things---things outside the house, things besides just getting through the days with their children. They went on getaway vacations, dinners out, fundraising events, conferences, opportunities to take great scrapbooking pictures, all kinds of things. They somehow didn't seem tied to the house by the drain on emotions and finances that I thought came along with this journey to Holland.

8. They were just in general a lot cooler than I was. They were the popular crowd, the insiders, the ones that have it all together. Autism has entered their life, but as luck would have it, right when autism is very cool!

I hope anyone reading this list sees that it's a bit satire-ridden. Of course all the blogs weren't totally like that---it's just how it felt to me on a down, depressed day. I know there are many, many, many people out there living a life like mine. They probably just don't have the energy to get to the keyboard. I've always written---writing is my break, my release, so that's how I use the limited store of energy I have. Others with lives like mine might cook, or sew, or watch TV, or just lie on the bed and stare at the ceiling. And they have every right to. Writing is how I survive, some days. So if you are reading, thanks, and please don't take me too seriously when I'm in this kind of mood!

Easily amused

I noticed the other day that there is a little clickable place at the top of my blog that says "Next blog" and being the curious type that I am, I clicked it. I don't know how they pick which blog is next, but it was fun to do---it took me to what seemed like a random other blog, and I kept doing the same thing with each blog and looked at all kinds of blogs. I think they each somehow loosely connected to the one before, as I got into a string of them about jewelry making somehow, so used the back button and tried again, and got different blogs. It was an enjoyable use of an hour. And I got some ideas about ways I should spice up this blog, or at least make it fit more in the family blog mode....

Put lots more recipes on, with pictures, and emphasize how I cook about 20 meals ahead and freeze them, and make my own flour and salt.

Talk a lot about my "dh", dear husband, and about how I married my best friend (I thought that was still illegal in most states?)

Mention much more often than I do about how blessed I am.

Take the kids on a lot more vacations and take a lot more pictures of them while on those vacations. Especially, I need to take them to Disney World.

Be relentlessly positive. Always look at everything as being on the way up.

Homeschool.

Put little apps on that show exactly what age my kids are, and how close it is to Christmas.

Don't have teenagers. None of the best blogs have kids older than 7 or so.

Start exercising, and write a lot about it. Keep a running log. Talk about how good I feel after a long run.

Shun junk food.

Get some jazzier background.

In general, don't be such a downer all the time.


I'm being sarcastic a bit, of course. And not all the blogs were like that. But I did feel like I'm not with the program in some ways, but then, I've felt like that my whole life. It's only in the last 5 years or so that I've been able to say to myself those two great little words and mean them..."Who cares?" Who cares if I don't have a house in the suburbs, kids in youth sports and a model's body? Who cares if my kids have never been in a plane and never set foot on Disney property? Who cares if none of us are totally mainstream people? Of course, some days I do care, but more often, I've reached the point where I don't care. I want my family to be happy, and to be decent, kind, thoughtful people. I think my boys are on their way, and I will do all I can to guide Janey in that direction. So, who care about the rest?