We have five new residents here at the Mothership. Most if not all of them are temporary, but they needed a place to stay and I try to be welcoming and help out when I can.

Ophelia came to us through a facebook connection who posted the following status message a couple of weeks ago.

Young white Siamese kitty with sable brown mask around sky blue eyes dropped off at campground. She's beautiful, knocked up, and looking for a home. Anybody?

You can imagine some of the comments, and they were numerous. I'm such a sap, I agreed to foster her through delivery and weaning of kittens. We waited for several days after she arrived, but in the wee hours of Monday morning the kittens were finally born. Healthy, happy, and quite beautiful, the momma cat has adjusted quite well to her surroundings. I took Eli up to see them before we left for school and his response was, "Awwww, they're adorable!" A friend of mine jokingly remarked that "If he wants to be autistic, he'd better quit saying stuff like that."

He made up for that remark later that day when we went to say hello to a little boy after school in the parking lot. H has Downs Syndrome and doesn't speak very clearly, but is a sweet and happy boy. I steered Eli toward him and his mom, asking about aide assignments for the year so far, as this is a bugaboo for us--rotating aides. Eli jumped right into the conversation by mocking H's speech and I was mortified. His mom took it in stride, but I didn't. She explained that his muscles don't always do what H wants them to, and that's why he struggles so much. I think Eli understood it pretty well and as we walked to the car, we talked about how hard it must be for H to want to communicate but have such a difficult time of it, through no fault of his own.

We kept talking and I tried valiantly to explain how an extra chromosome can affect someone. Just one little tiny piece and it can cause so many challenges and health problems. I mentioned that some people with Downs Syndrome have heart problems and Eli was really concerned, asking why doctors can't just take out the Downs Syndrome. Yikes.

He really is a compassionate little boy and I don't think he intended to hurt H's or his mom's feelings by mocking. I want to believe that he was just making an observation, not criticizing. I recently brought up the fact that Eli has autism to him with a homework assignment that innocently asked, "What makes you special?" He was stuck on that question, not knowing what to write and I said, "Well, you have autism, and that makes you special. It's what makes you so good at math but not so good at making friends and playing together. It's what makes some sounds too much for you--why you don't like bright lights and stuff like that." It made him uncomfortable talking about it and in the end, he refused to answer that question, making me feel like I had jumped the gun.

But I didn't. He does have autism. He should know it. We ALL have something about us that makes us unique, and his autism is a big part of who he is. There is nothing to be ashamed of--it's HIM and he is really a delightful kid most of the time.

And he's becoming more typical as he ages and matures. We see this more and more these days -- things he says and does that make me question his diagnosis. Then he blurts out something as he did to H and I don't question it. A typical 8 year old would spot a difference in H immediately and innately know to not mock his speech, at least not in front of moms or teachers. He saw nothing different about H.

We don't treat Eli much differently than we treat the other kids in the house. He takes his dishes to the sink, will set the table for dinner, and is learning to put his clothes in the hamper instead of on the floor. He is held accountable for his actions and disciplined accordingly. But sometimes, we have to adjust. Last week, Jim walked up to Eli and greeted him with "Hi Eli! What are you doing?" and Eli reacted with a hateful "Leave me alone! Just go away!" Jim was frustrated, as he had a right to be, and I had finally had it with Eli's response. Rather than just send him into timeout or to his room for being rude, I decided to experiment with a little role-playing. I had Jim go back inside and told Eli that he was rude, to try it again. I coached him to respond with "Hi Jim! I'm playing my game." or something to that effect, rather than telling him to go away. I told him that it makes everyone's day nicer if he responds nicely, rather than rudely. Jim came back out, greeted Eli, and Eli responded as he was told to. Not that big of a deal, but it worked. From now on, if Eli responds rudely to someone greeting him, we will have a do-over, until it finally sinks in.

In the long run, it will sink in. It will pay off for him his entire life--knowing how to respond accordingly--but it is going to take time and effort and consistency. That's okay. He is completely worth it. And he proves it by saying things like, "Awww! They're adorable!" because the kittens are really adorable, and so is he.

Not so autism-centric anymore

It's been a while since I last wrote anything here, and I've been pondering what to write about for a couple of days. I wanted to keep the blog sort of autism-centric, but the truth of the matter is that my life is nowhere near as autism-centric as it was a few years ago.

This is a good thing, for me. I got sucked into the abyss and it was hard to scramble out of it with my mind and sense of humor intact, but I did. Those first couple of years after Eli was diagnosed, I was addicted to the drama of the forums. Within a month of his diagnosis, courtesy of the forums, I became convinced that his autism was vaccine induced, then started to get away and read more of the science side, rather than the emotional side. It became clear to me that it was not the shots. Science should trump emotions, but it doesn't work that way all the time.

So now, a few years, five to be exact, after he was diagnosed, I don't eat, breathe, drink and sleep autism. It's there, and sometimes is in the forefront, like when Eli has friendship problems, or when he freaks over a Lego creation breaking. But you know, it's not that big of a deal anymore.

I realize that this is due to sheer luck of the draw. When he was smaller, I had fears he would never talk, most specifically that I would never hear him say, "I love you, Mom" because he started talking so late. Suffice it to say that he says it now, and that's just luck. He could have easily been a child who never spoke. I worried that he would never toilet train, and by the time he was 4, this seemed like a valid concern. But thanks to an amazing preschool teacher and an endless supply of M&Ms, he got it before he was five. Later than the norm, to be sure, but he did get it. This is also lucky, since many autistic kids train much later or not at all.

I got lucky. That's pretty much it. I am not the most outstanding mom and truthfully, sometimes I am a lazy mom. I am older, more tired and more jaded than I was for that first batch of kids. I don't want to take the kids to the pool. I don't feel like baking cookies. I have never been a play-doh mom at all--can't stand the smell. So how did I get so lucky?

It all evens out, I guess. I got lucky in that area, but not others. One of my older boys is at a crossroads right now and is not seeming to make good choices. It breaks my heart, but I can't stop it. It is so very painful to see someone on a downward spiral when you can't do anything to save them from themselves. I can't ground him. I can't spank him. I can't talk to him. I have tried, but it hasn't made any difference. I love that kid so much. He was the one to spontaneously give me hugs at the age of 3 and say "I love you Mommy" when there was nothing to be gained from it. He's always been a sweetheart and I just can't stand to see him hurt. But it's him hurting himself. How do you stop that?

Tough love. I remember when that term was first used way back when. Now I have to exercise it, and it is just as tough on me as it is for him. All I can do is watch from the sidelines and hope for the best as it works itself out, for better or worse.

Compared to this, autism is a piece of cake.

When you're down, and troubled....

So I have James Taylor's greatest hits. Call me an old folkie, but he soothes the soul. And once in a while, when I am feeling a little blue, if I play his songs, I start bawling. Today is one of those days.

I watched little Eli try to play with neighbor kids yesterday and the night before last. Epic FAIL.

The first was a little neighbor girl who was riding her bike up and down the walk in front of our house. She's a nice little girl, two years younger than Eli chronologically. However, socially, she is light years beyond him. She already had a little playmate over, and Eli naturally gravitated toward them. It began nicely enough, but then an argument ensued over who was older. Eli is 7 and the little girl is 5. Obviously he is older, but the other little girl present is apparently 8, which is what led to the big argument. I am not sure what exactly was said, but it escalated to the point that I had to separate Eli from them. He was very upset.

The next was a small group of kids playing with the toddler next door and a couple of parents standing on the sidewalk supervising. Instead of turn taking, Eli decided to take the ball and roll himself around it, screaming and kicking when anyone tried to take it from him. When it became apparent that even the parents were too afraid to just TAKE it, I intervened, distracting him with the promise of yanking out that dangling tooth on the bottom. He instantly forgot all the drama, but the scene is etched indelibly in my mind. The parents sort of hovering, looking dismayed and nervous--the kids eyeing him with suspicion.

Last spring, I bit the bullet and sent out a mass email to all the South Side parents on the mailing list practically begging for someone, anyone to give Eli a chance. I explained that he has autism, described him and his symptoms, and said that I would love for him to have the opportunity to make some friends. Well, I got a ton of responses to the email--moms telling me they understood, would love to have their child play with Eli, etc. Guess how many actual playdates came out of it. One. Just one. A big thanks to all those who responded, but never followed through. It seems as though people like to portray themselves as understanding and tolerant, but when the chips are down, they don't want my kid around theirs.

I don't get it. He is not a violent child. He will occasionally hit, but so do most other kids, especially 7 year old boys. He is very talkative and has a fantastic imagination. He likes Legos and tends to get possessive over his creations, getting upset if someone breaks them--so do other 7 year old boys. He is compassionate--gives other kids hugs and tissues if they are crying. He loves plants--identifying irises and peonies as we pass by gardens on walks or drives. He is friendly, saying hello and asking "What are you up to today?" of the neighborhood when we walk the dogs.

So what the hell is he doing that is soooo wrong?!

Today is just a bad day, I guess. I have plans to take treat bags and popsicles to his first grade class to celebrate his birthday, since it falls in July and he wouldn't get this opportunity otherwise. To tell you the truth, it's a sham. I spent money and time trying to get these kids to say "Hey, Eli isn't so bad after all" when I know that it's just a waste. They have their attitudes and opinions of him set already. A couple of children in the class have already appointed themselves his tattletales, reporting every single tiny thing he does to the teacher. I kind of want to say to those kids, "Sorry! No treat for you!"

I finally picked up the copy of Since We're Friends, an autism picture book. In the book, the little autistic boy has a good friend who is understanding and defends his friend in social situations. He helps him, since they're friends. But Eli doesn't have even one friend to rely on. Not one.

So now I am off to listen to Sweet Baby James and You've Got a Friend and cry for a while. Not productive, not proactive, but self indulgent and at this point, possibly cathartic.

No Comment

To say I am frustrated at this point would be an understatement.

The following topics will elicit no comment from me from here on out.

Childhood vaccinations
Autism induced by vaccinations
Abortion
Gay marriage/Gay rights
Gun control
Alternative medicine
Illegal immigration
Neurodiversity
Prenatal testing and resulting eugenics
plus a whole host of topics that I can't even remember right now, I am so pissed.

Why?

Here's why. I am sick to death of being lambasted by someone for having an opinion and expressing it openly. Who are the someones in question? You name it. A friend, an e-friend, a stranger on the Internet, a relative, a neighbor. Lambaste me no more, because I have no opinions.

I am tired of arguing with people who have closed their minds. I have been accused of blindly trusting my government because I had my kids vaccinated, told that guns don't kill people, taken to task for asking if I should tell my son he is autistic, told that fearing eugenics is just plain silly. I have been argued with over Gay marriage and rights by people who honestly and truly believe that homosexuality is not inherent, that it is a choice and that said people must live with their choices--that they just have to accept that they are not equal. I was told that a mother who has an abortion when she already has children should simply kill her existing children if she can't afford another child.

This is why I have No Comment. One has no comments when one has no opinions. It's just easier this way.

If Not for You...

I've spent a lot of time up on the third floor these past couple of months working on making the Mothership a more beautiful place to live. Sanding, stripping woodwork, tearing up old flooring and painting the walls a lovely shade of green. While I am up there, I listen to loud music to entertain myself. I splurged on an iPod for myself at Christmastime and love love love it! I connected it to an old wired set of speakers for a computer with an amazing bass boost, which probably doesn't thrill my neighbors, but it keeps me going.

Some of the songs stick with me, like they always do, and lately it's been Bob Dylan's If Not for You. I think about how my children have affected my life and how much I have changed since they arrived on the scene over 22 years ago.


First was Max, my beautiful little blue-eyed wonder boy who read at the age of three and cried when his Kindergarten suit did not fit him for first grade pictures. He's all grown up now, living hours away and working at a REAL JOB. He has pets and pays bills. That's grown up to me.

Next came Sam, my planned baby. He is a drummer, and I always knew he would be! He will be 20 soon, and has already done the "move to LA to be a famous rockstar" routine, came back home and moved into a party house across town. I do not approve, but it's not my place to approve. It's my place to let him live his own life and learn from past mistakes. He'll learn, eventually.


My Alice is a peach of girl, most of the time. She arrived a little over a year after Sam, a sweet baby girl with a deep dimple in her right cheek, just like her daddy. Having lived through her teenage years, I can honestly say that boys are easier than girls at that age, but now that she has finished a year of college, lived on her own and held a job the entire time, I'd say she has proven her worth in the real world. Not to mention that she is a lot of fun to sit with on the porch people watching.


Hannah showed up a bit after the first three. She is just finishing up the sixth grade and is very proud to have been in the spring musical, as well as making the middle school's pom squad. She is talented as a singer and an amazing dancer, two skills she did not inherit from me. She got my overbite, dammit. She is a funny kid--always wants to be the center of attention and loves to make people laugh.


Then came Eli. He is another beautiful blue-eyed boy, and closely resembles Max physically as well as in personality. Weird, since they have different dads, but there it is. He changed me more than the other kids, in a good way.

The song may have been written for a lover, a friend, a child. I don't really know. All I know is that the lyrics touched me and I would get all misty listening to it. I would see slideshows of my kids' faces smiling as Bob sang his heart out.

I don't often wonder about how my life would have been different without all my kids in it. They have been with me for so long, I could not imagine my life without them.

If Not For You

If not for you,
Babe, I couldn't find the door,
Couldn't even see the floor,
I'd be sad and blue,
If not for you.

If not for you,
Babe, I'd lay awake all night,
Wait for the mornin' light
To shine in through,
But it would not be new,
If not for you.

If not for you
My sky would fall,
Rain would gather too.
Without your love I'd be nowhere at all,
I'd be lost if not for you,
And you know it's true.

If not for you
My sky would fall,
Rain would gather too.
Without your love I'd be nowhere at all,
Oh! What would I do
If not for you.

If not for you,
Winter would have no spring,
Couldn't hear the robin sing,
I just wouldn't have a clue,
Anyway it wouldn't ring true,
If not for you.

Copyright ©1970 Big Sky Music

A Quandary

Yesterday when I picked up Eli from school, we went straight to the grocery store. This was a break in our routine from stopping at the gas station for a candy bar, a reward for completing his daily goal. However, the store is far and away his favorite place. This child loves to food shop.

I had also planned a trip to the local Borders to buy Since We're Friends for him. Lately, I have been thinking about telling Eli he has autism but I don't quite know how to approach the subject. I figured that this book would help me out a little. But I am getting ahead of myself a bit, here.

We were in the car chatting about what we were going to get at the store when I broached the subject. There was a lull in the conversation and I said, "Eli, did you know that you are different from other kids?"
"No I'm not."
"Yeah, you are, a little bit different isn't a bad thing ya know."
I struggled to find a point of reference that he could grasp and followed with
"Not all kids have a teacher helper like Miss Bonnie, do they?"
"Well, ya know Mom, I'm pretty smart in Math. I can do the problems all by myself with no help. Maybe the other kids could have Miss Bonnie help them, instead!"

At that point, I just gave up. The kid has a point. Other kids could have Miss Bonnie help them, instead.

Off we went to the store, loading up on the usual fodder, along with just a few special things he wanted like Little Debbie Zebra Cakes. Mmmmm, sugar. He will try to slip stuff into the cart when I am not looking, but we usually limit his stealth purchases to just a few things. If I let him do all the shopping, it would cost a fortune! Finished, we drive across the way to Borders. I told him I had a special book in mind just for him.

I curse Autism Awareness month. The book was out of stock and I would have to order it, but the customer service person was less than pleasant so we left and went to Barnes & Noble. Also out of stock! Grrrrr. However, the clerk was far more helpful here, so I went ahead and ordered it there. It should be here in a few days.

We got home and wandered off to do our usual wind down, him getting filthy in the backyard throwing dirt clods for the dogs to chase, me putting away groceries, and I started to wonder--Is this really a good thing to tell him? Will it make him feel bad? How will he handle it? Will he even begin to understand?

Later in the evening, Jim and I sat on the front porch swing and talked it over a bit. My point was that I would rather have him hear it from us than from some kid at school and Jim totally agreed. About that time, I heard Eli call his sister a choice name and had to smile in spite of it all. Sometimes he behaves so close to typical--and we experience this more and more these days. I said to Jim, "Ya know, maybe now is not the right time. The kids at school are pretty accepting of Eli. Maybe I should wait a little longer."

I just don't know the answer to this, and there is no answer, really. There is no perfect time for a conversation like that with your child, near as I can tell. I want him to be proud of himself just the way he is, and right now, he is very proud. Maybe I should just leave it for now....

Mornings with Eli

I treasure the drive to school each morning with my son. Really. I never know what topic of conversation will come up, and today it was rhinos.

It's like this every weekday. It's just me and Eli in the car since his older sister has gone off to the wilds of middle school and even if it's a scant ten minute ride, he has a lot to say.
"Do rhinos eat dandelions, mom?"
"Well, a rhino would probably eat a dandelion. I think they like to eat flowers whenever they can."
"Would a rhino trample your flowers?"
"Most likely, but that would be okay if we had a pet rhino. Pets do stuff you don't like but you keep them anyway."
"Could we have a pet rhino?"
"No, we don't have a big enough yard and you would need a REALLY strong fence to keep it in the yard."
"How much does a rhino weigh?"
"..............."
"Mom?"
"Ummmmm, probably about as much as a car. I'm not really sure."
"Where do rhinos live? Africa and Asia?"
"Pretty sure about the Africa part, but I don't know about Asian rhinos. I know there are elephants in Asia. You know, rhinos are endangered, there aren't many left in the wild because people hunt them for their horns."
"Why? Do they eat the horns? Do they eat the rhinos?"
"No, they just kill the rhino and chop off its horn for wacky medicine."
"That's mean!"
"I know, and it's very sad and very wrong to do."
"I would keep a rhino for a pet if I could. Mom, I really wanted to go back to bed and not go to school."
"I know, babe. Me too. But you are early today! You can play on the playground with your friends while you wait for the bell. And maybe we can get your hair cut after school today. It's getting so long and will start to get hot when summer comes."
"Do rhinos sweat?"
"........... "
"Mom?"
"I don't know, sweetie, but I will google it when I get home and find out for you. Here we are! There's Miss Bonnie waiting for you."

He reminds me of Dead Man Walking some days when he gets out of the car to go into school. It really cracks me up, because once he is actually in the building he has tons of kids saying hi to him and he generally has a good time, but getting him there......

"You have a great day sweetie, I'll be right here waiting when you get out this afternoon."
"........."
"Eli?"
"I really wanted to go back to bed."


For the record, rhinos do sweat.