Ch-ch-ch-changes

Time to shake things up a little bit. If it ain't broke, don't fix it, right? Turns out it's not broken, but still needs a little change.

Routine. Autistics tend to rely on routine and find comfort in it. For example--mornings I take Eli breakfast in his room. He's slow to wake up and mornings are hectic so I don't mind taking it to him and allowing him to eat there. No problem, and I don't see a reason to change it. Another routine--dropping him off at the same spot each morning and watching as he walks into the school. PB & J for lunch--yet another routine. Same old same, but it works.

But what happens when a routine becomes a problem? What then? Rip the bandaid off or pull it slowly? For most people, ripping seems most humane. Get it over quickly and it will be less painful. With Eli, slowly seems to be the answer.

Eli's dad and I are no longer a couple. The transition was slow, and sometimes quite painful, with his dad sometimes returning home for periods of time. Ultimately, we both knew the breakup was coming. So when we finally called it quits, it was no big surprise. For Eli, it seemed as though he had accepted it in his own way over the course of a year or so.

At first, his dad did not even see Eli for periods of up to and over a month. He just didn't show much interest. However, people change and over the course of this past summer Eli started spending weekends with his dad. Every weekend. Without fail. I must admit that this made me happy for a couple of reasons. First, his dad was finally taking an interest in his only child. That's a good thing on every level. Secondly, I got some much-needed and very appreciated respite from a reasonably high-maintenance child. Over the course of time this weekend routine has become a problem. Allow me to explain.

The Mothership is a very active household. There are at present time 6 of us in residence, including siblings, not including pets. We have two Labradoodles, Max's little mutt dog, five cats and two parakeets. It's loud, busy, and frequently messy--all factors that make an autistic kid a little on edge at times. His dad lives alone in a two bedroom apartment that does not allow pets. He also is unemployed, which means that the time he spends with his son is probably the most fun he has all week. No siblings, no pets, no noise, very little mess. He gets to be the center of attention at ALL times, being spoiled with his favorite fast foods and video games. Weekends are free time which means no getting up for school, no homework, and lazing around all day long.

Home, on the other hand, came to mean home-cooked food, homework, getting up every morning for school and the frequent chaos of a busy household. Guess which one Eli likes the most? You got it. Dad is now King.

This hurts me beyond what I could have expected. His dad has never read a thing about autism. He does not attend meetings, though he has occasionally gone to doctor's appointments with me, most recently to see a developmental specialist. That was over two years ago. So yeah, I have borne the brunt of parenting this very special little boy. I fight for him. I get up in the middle of the night with him. I make sure he gets his coat zipped and he has fruit snacks in his lunch for dessert. I get him to school on time every day so he doesn't have to get a Late slip, which he hates. I help him navigate social waters the best way I know how. I adore this little boy.

So, imagine having him walk in the front door after a visit at dad's, telling us we are all "lame", that he hates our home, he doesn't want to be here, he wants to stay at his dad's. Crushing. It is really all I can do to not just go to bed and cry over it at times.

Time for a change. Shake it up a bit. After talking to Jim about it, we came up with a plan. Instead of every single weekend at dad's, Eli is starting an every other weekend routine, with him also going to dad's each Wednesday night and dad taking him to school Thursday mornings. The reasoning is that if his dad has to take him to school, getting him up and to school early, then maybe Eli will understand that it's not just ME, it's reality that he has to go to school. Further, our family has some really fun times on weekends, and Eli has been missing out. And we miss him.

Our first shot at this didn't turn out so great. I went to pick him up from school after his first schoolday from dad's and he was not happy to see me. He was confused that it wasn't his dad picking him up. He was angry. The day didn't progress well from then. I was hurt, he was pissed, and neither one of us did a very good job of hiding our feelings. But we did eventually bounce back and I am still sticking with the new routine. This weekend should be fun, with some friends coming over tonight for a birthday celebration and a gingerbread house for Eli and Hannah to construct tomorrow. I am looking forward to letting Eli sleep in tomorrow morning and just play around all day. No structure, no routine, just play. Watch tv, play Toontown, make a gingerbread house and maybe some Christmas cookies. I dunno, really. Just an average weekend--at Mom's.

We are all on the same team!

So here we are. School meetings. Can I just say that my son has an outstanding team of people behind him?


Yesterday was the first time since the beginning of school that we have had a Team meeting for Eli and it went fantastically well. We all packed ourselves around a table, sitting in tiny chairs, meeting agenda sheets in front of us to talk about that sweet little kid I call my son. In attendance were:
Principal and Assistant Principal, Classroom Teacher, Cross Categorical Teacher, Teacher Aide, Speech Therapist, Occupational Therapist, Social Worker, Autism Team Member, and of course, Me.


It was a great meeting! The format is casual, as this is not an official IEP meeting. It's a format where we meet every other month to discuss progress, strategies that are working, strategies that are not working, and goal assessments. I know these people well, which is an advantage. It doesn't matter that some of the team is new this year--I've been in contact with all of them--sometimes on a daily basis. Each day when I pick him up from school the aide walks him out after he has "checked out" on his goals sheet with his social worker and she gives me the low-down on how his day went. If he meets his goal, 80%, we stop at the gas station for candy. If he does not meet his goal--no candy. Sugar is a motivator and I am not ashamed to use it.


We are a TEAM for Eli. What this means to me is that we should all have the same goals and support each other. But Eli is a member of the team as well. Though he is not present at these meetings in person, we each feel his presence in the stories we share--both the accomplishments and the failures. There is a quote about how someone learns more from their failures than from their successes but I'm too lazy to look it up. Makes sense though.


I have written in the past about Eli's conversations and experiences with other children, and how I would like for social coaching to be a part of his personal curriculum. As he grows older, his differences from his peers will become more pronounced, not less. He is not going to just blend in. That's okay. We are not a family of blenders. We are individuals and all have something to contribute, right? So now, two years after I started pushing for socialization coaching, someone listened.


Eli loves other children and tries to engage them, but sometimes is too intense. He tends to obsess, which is okay in some instances, but if he is asking a question repeatedly, not listening to the answer, it turns other kids off and they wander away. Problem is, Eli is not paying attention. It was the OT who came up with a plan, bless her heart. She has noticed that though Eli may be paying attention with his ears, his eyes are not where they need to be for successful interaction. He needs continual prompts to look at his buddy--to notice facial expressions and body language. He's very good at decoding expressions and body language, but if he isn't even looking, he isn't going to have anything to decode.


His OT is a mom. She has four beautiful daughters who are friends with my older kids, and one of the girls has a learning disability. She understands the pain of not being included and really wants to help Eli connect. WOW. Someone who gets it! Her plan involves a lunch buddy for Eli--an older child to eat lunch with and help him navigate on the playground at lunch recess--a 4th or 5th grader who is likely to be a bit more patient than his peers and guide him in the mysterious ways of interaction. I LIKE this plan.


Don't misread my post by assuming that Eli is a total social outcast. He isn't--yet. The plan is to help him learn to converse/interact in a semi-normal way with typical peers. He wants to, and his classmates want to as well. His aide tells me that as soon as he hits the hallway in the morning, there are greetings coming from all directions. The other kids want to be his friend, but they don't know how to deal with him. It's just a matter of meeting in the middle, really.


And please, if anyone has suggestions for helping him learn to pay closer attention to nonverbal cues, share them here in the comments. As far as I am concerned, if you are reading this and you care about Eli, you are part of his team. Doesn't that feel good?

Give a Little Bit

I received an invitation to an event on Facebook a couple of days ago. This is not an unusual circumstance as I get invitations all the time, usually to my son's punk shows in the basement of his house or at a similar venue. While I do enjoy seeing him drum and hordes of young people sweat, I frequently turn down these invites. It's tough being the oldest, yet freshest smelling attendee.



No, this event is different and ongoing. It's an event that must be attended. And it has nothing to do with autism, so if that's why you are here and reading, I apologize.


In short, our local Women's Shelter is in danger of closing its doors due to lack of funding. It's not a homeless shelter, per se. Rather, it is a safe haven for victims of domestic violence or sexual abuse and their children. In these unbelievably already trying times, women may soon have no where to go, no one to talk to in the most difficult time of their life--a time that they are trying to break free and start anew.



It's no mystery as to why this is happening. State funding has been cut and employees have been laid off. Those who remain have no clear idea of when or even if they will be paid, yet they stay. That is dedication. That is caring and concern.



The shelter needs help, and I intend to give it in anyway I can. I am free in the daytime and hope to be able to volunteer in some capacity, whether it is manning a phone line or helping to raise much needed funds or organizing other volunteers. At the very least, a monetary donation will help, no matter how small.


I feel very fortunate in my life. I am healthy and happy, as is my family. I don't fear for my safety in my little world. But for scores of women, fear is a reality they cannot escape without help. Please, if there is anything you can do, monetarily or otherwise, pitch in. Without help, the shelter will be closed and women will really have nowhere to turn. If you cannot help monetarily and live far from here, please contact your local women's shelter to volunteer in some way or donate clothing, toys, furniture--whatever they may need. This is everyone's concern and if it isn't, it really should be.


Thanks for reading. Please visit A Woman's Fund for information on how you can help.

I gave up. Plain and simple.


I've left the forum about which I blogged yesterday, never to return. Why? I'll tell you why.


All it really did was make my blood boil. So many people there, yet only a handful of people posting away, squatting there all day long. I found myself embroiled in a silly contest of trying to counteract all the madness of the anti-vax crowd by posting actual autism news stories and supportive posts, but it was a losing battle. In the end, very few people commented on the actual autism news stories, which indicates a lack of interest. People want to read all the doom and gloom and warnings of impending mind control. They must, or there would have been some sort of response.


I had started to visit the forum far too frequently over the course of my day. Morning, noon and night I was logging in, seeing how many new anti-vax threads had begun and how many tragic stories had been posted with titles like Autistic Boy Hit by Truck Dies. They were countless. It was depressing and frustrating all at the same time, and that can't be good.


I was asked why I started going back by someone close to me, and I really had no good answer other than, "I'm bored. I really have very little to do during the day. At the very least, I'd like to think that I could help someone with advice on how to get a stubborn preschooler's foot into his shoes." Hint--Bend the child's knee. It uncurls the toes and the foot slides right in. But ultimately, I have to admit that I am drawn to the drama.


I'm not accustomed to being unemployed. It sucks, big time. There is no lack of money, thanks to unemployment, but I am seriously bored out of my mind. There is only so much housework I can do before I start to feel like a live-in maid. I only see friends occasionally these days, since they are busy with their jobs and lives. I am not. I am stuck at home. I hate it.


So the drama was a big draw. It was something to do to pass the time, watching people snipe back and forth at each other, toeing the line constantly to keep from being warned or banned by the moderators. It always puzzled me that the moderation on the forum was so incredibly inconsistent. And of course, there are the two sides involved--the crowd who absolutely buys the Vaccines Cause Autism hypothesis and the crowd who doesn't believe it for a minute. Each side cried out that the moderators favored the other side, much like a couple of kids who think the other is Mom's favorite.


I have a novel I've started but can't seem to prod myself into completing it. I know that very few people actually have their work published and it's tough to convince myself that writing is going to pay off one day. It's a fun little book, and the characters are indeed colorful and well-developed. The plot is outlined and I do enjoy working on it, but it's tough to make myself keep plugging away at something that may turn out to be a colossal waste of time. So, rather than set myself up for rejection and failure, I turned to the mental stimulation of the forum. Stupid, right?


I'll not go back now. I can find other ways to pass the time. Today, for example, I'll start carving pumpkins and take Eli to lunch at McDonald's after an early out from school. Parent-Teacher conferences are today and tomorrow, but I am off the hook for those. We have regular team meetings for Eli, so it's a waste of time to do a regular conference. He is having a great year at school after a bit of a bumpy start and I don't anticipate a ton of issues to discuss. In the long run, he is the only autistic kid I really need to worry about, and that's just as things should be for me to keep my sanity. There are other experienced moms on the forum, so I'll just turn over the reins to them and mind my own damn business.

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.

Back Into the Fire

It happened again. I got into a debate with an anti-vaxxer. Sigh. When will it end?

It happened on Facebook, of course. I rarely even read the forums anymore, let alone post on them. A friend had posted something about the Swine Flu, which evolved into a massive thread about vaccinations, and vaccine-induce autism was mentioned in passing. Oh hell, talk about a button being pushed. The culprit was a woman who said, "Tell that to the parents who have watched their children become autistic after recieving thimerosal containing vaccines ... including my nephew, who was perfectly normal before recieving the MMR at age 2, then spiked a 106 fever, had a seizure, got a blank look in his eyes, lost all his language and has never ever been normal since. :-( " What the hell.


I politely corrected her on one count, letting her know that the MMR does not now, nor did it ever contain thimerosal. So then she says, "Actually ... I was just reading up on the MMR/Autism debate today, and now they're thinking it's not thimerosal that's the culprit but the actual Measle's virus used infecting the brainstem. Point is, they don't really know what causes the autism MMR connection, I just cannot refute the evidence of my own eyes. " What?!
And who are "They" anyway? They don't really know. My point exactly, but without the MMR connection. She goes on to proudly state that she stopped vaccinating her own children after reading the list of vaccine ingredients and claims that those who do vaccinate their kids display a "religious fervor" with their faith in vaccines preventing illness. Huh. Religious fervor, eh? Take a look in the mirror, sister. Vaccines aren't the big bad boogeyman here.


To say I got a little worked up is an understatement. Ridiculous misinformation is being passed along via Jenny McCarthy and her crew and it shows no signs of stopping. I politely posted a link to the Fombonne study, a fave of mine, and let it go.


I really wish that people such as the woman I quoted would stop for a moment and think about what they are preaching before they pass it along. Obviously, she has taken bits and pieces of misinformation along the way and sewn them all together to make a cozy quilt of blame. She doesn't really know what she is talking about, and that was apparent from the start. So why on earth do I let myself get sucked into this kind of crap?


I don't care why my son is autistic. I got past that long ago, and accepted that he is how he is regardless of reason. He is a wonderful kid with a lot to offer, and I refuse to accept that some people will continue to think of autistic kids as toxic, vaccine-damaged, train-wrecked shells of what they once were or should have been. Bullshit.


The woman seems nice enough. She cares for her children, I am certain, just as I care for my own. She is doing what she thinks is right and safe for them, just like me. However, I got the feeling that she doesn't harbor the same goodwill feelings toward the likes of me. Her comments were heavily laced with "I don't vaccinate my children because I love them and anyone who does vaccinate does not have their child's best interest at heart" type of innuendo. She got pretty defensive when a different commenter stated, "Yeah I think it's great you're letting your children be a breeding ground for new viruses. The world thanks you."


At any rate, I hope that she will at least think twice before she drops the "vaccines cause autism" shit bomb again. But I kind of doubt it. Religious fervor, indeed.

Training wheels just aren't cool anymore

Bike riding seems so basic to us, we tend to forget how tough it can be to learn. The old "It's like riding a bicycle" is applied to tasks that are like second nature by now.

Not so simple for a kid like Eli. This will be our third summer for trying to help him learn with no training wheels. Last summer, he finally mastered braking with coaster brakes, only to completely forget that skill over the winter. Our first couple of trips around the block this spring were nerve-wracking for me to watch. I need to constantly remind him to pedal backward rather than just dragging a foot to slow and stop.

Our street is fairly quiet, and there is a parking lot for a church at the end of the block to practice, but Eli doesn't want to practice at all. He wants to master tasks instantly or he has a tendency to just give up. Last night, I overheard him and Jim playing in the backyard and Jim kept trying to teach Eli how to throw a ball overhand for the dogs to fetch. Eli didn't get it right away and got mad, stomping off. So we have our work cut out for us.

I got a great first bike for him at a yard sale a few years ago, and envisioned nice family bike rides like I see here in the neighborhood. Didn't happen. I spend so much energy just trying to make sure he doesn't go flying uncontrolled into the street that I can't enjoy it myself. It is frustrating, to say the least, and disappointing for my older daughter who rides like the wind at the age of 11.

I mentioned this to the social worker at school a couple of weeks ago and said I had heard of a bike riding clinic for kids like Eli. She had heard of it, too, but didn't have the information at hand and promised to look into it. Yesterday I went through Eli's backpack after school as usual and there was a sheet from her with TONS of resources for summer activities and the bike riding clinic.

Bike riding means freedom to kids. It's fast. It's fun. It's what most other kids do to get from A to B in the neighborhood. And most importantly for a kid like mine, it's achievement. So we are definitely going to sign him up for this and follow through. It's a 45 minute drive from where we are, but well worth the trip!

Here is what I found, and I hope someone else benefits from this information. The program is called Lose The Training Wheels and I hope we do.

Labels and snap decisions

I don't want to make the mistake of sounding like everything is all rainbows and unicorns all the time here at the Mothership. We have scuffles and bumps in the road like any family and with girls (including one teenager and one who wishes she was a teenager) there is somtimes even HIGH DRAMA. I try to keep my head at these trying times, sometimes even succeeding!

Eventually, we get around obstacles or over, or through them; whatever it takes. When Eli was 3, he had sleep problems. That's an understatement though, really. This kid would maybe sleep 3 or 4 hours a night and that was a good night. I checked out options and tried melatonin for him before trying meds, as his doc was leery of the effects of antypsychotics on a child so young. No duh. The melatonin worked great for a little over three years, then abruptly stopped working. I removed it completely, waited two weeks and then reintroduced it -- nothing. Over summertime it wasn't the end of the world but when school resumed it became an issue pretty quickly.

I talked to his doc about Clonidine (not an antipsychotic) and we gave it a shot. I had already talked to other autism moms I know and some of their kids took it with good results. Eureka! Sleep, blessed sleep. Eli functioned better at school and was able to cope better throughout the day, and he was actually able to learn and retain information better with a decent night's sleep. We have adjusted the dosage a couple of times now but I am of the school of "If it ain't broke, don't fix it" so we try to not mess with too many variables.

Fast forward to the IEP meeting last week. One of the members of Eli's team broached the subject of ADD and meds to treat it. You know the routine -- they gently suggest it and you just know that secretly, the staff is all silently praying that you take the bait and immediately slap your kid on the latest med. Oh okay, so maybe that is exagerrating, a little, but you know what I mean.

They had set the scene by being concerned about his reading skills, which are admittedly below par for his grade. We all know this already, and are working to resolve the gap between him and his peers. However, I don't want to justify medicating for ADD with a gap in his skills. Not so fast. There are many actions to take before resorting to medication. He does have problems with focus but he is still pretty young and there is still time for him to catch up.

Furthermore, he has not been formally evaluated for ADD/ADHD, so I tried to not freak out immediately and dig my heels in any one spot. I tend to make snap decisions in a lot of areas, but this is one that definitely deserves some thought. Coincidentally, Eli just had an appointment with the family doc yesterday for a meds check -- to see how he was doing with the Clonidine. I brought up the possibility of ADD and sort of got defensive, but checked it because this is not about me. It's about Eli and what will ultimately help HIM be most successful. I just don't want him to be defined by a bunch of labels early on, but if the labels help other people know what to expect with Eli, then so be it.

Our game plan at this point is conservative but aware. We are going to try to remediate his reading over the summer with books he might actually like and see how much that helps. Eli is such a funny kid -- he told one of the staff that the story she had just read was "The lamest story I ever heard" so I think there are better options than what the school is offering for reading. He has a library card already, so I am going to make more of an effort to use it. I also asked for the forms to fill out for ADD assessment and got two for his teachers next fall to fill out in October, when school has been in session for a bit and they know Eli better. We can better decide what course of action to take for him after that. If he winds up with another label, that's okay.

I am still really torn on the issue of meds. Ultimately, I feel the fewer he takes to alter his brain chemistry, the better. But I saw dramatic improvement firsthand with the addition of meds to help his sleep, so I am not shutting the door. I am more kind of peeking through it first.

Meetings--a hallmark of autism

Spring is here, and with it comes meetings. Reevaluation and IEP time. I feel for parents of newly diagnosed kids, as this can be a daunting experience if you don't know what to expect.
When Eli was three years and nine months old, I attended the first of many IEP meetings. Boy, what a difference a few years can make! That first meeting pretty much blew me out of the water. I think there were eight members of his team present, though the details are admittedly fuzzy now. What I do remember most of all was the feeling of defeat. I felt as though it was a session of "Let's pick apart every little idiosyncrasy this tiny kid has and make his parents feel like crap" though that was not the truth at all. I felt as though there were all these professionals present, and surely they must know what was best for him, and it made me feel like a failure as a parent. I cried afterward, though Miss Maggie and the other professionals present were quick to point out his strengths when I said something like "It seems like he has so many problems and nothing good in his favor."
Fast forward to today's meeting with his social worker at his current school. Totally different experience for me. I don't dread the meetings anymore, well, at least not so much. I feel far more empowered than I did back when he was a tiny tot. What made the difference? Knowledge. Experience. Confidence.
Knowledge with what his rights are under the law. Some of this has come from friends, most notably a dear friend in Alabama with a son a bit older than Eli. She has done this for years, and has been a valuable resource in so many ways. She advised me to research Wright's Law, so that I would be familiar with what Eli's rights are. Another great resource has been From Emotions to Advocacy, which I consult before important meetings that may have a contentious tone from the start. It helps me to put things into perspective--to take my emotions out of the equation for a while so that I can be the best advocate. Good advocates don't crumble into tears during meetings, nor do they make idle threats or lose their tempers. I am Eli's advocate as well as his mom, and I need to do the best job I possibly can.
Experience is very empowering for meetings. The unknown causes fear, uncertainty, maybe even a little dread thrown in for good measure. This is Eli's fifth year for an IEP. I know what to expect, how to prepare myself, and what to really fight for, if necessary. A good example of experience helping me was earlier in this school year, when there was no consistent aide for Eli assigned. He struggled daily for the first few weeks with different people being his helper (his term), and I could see immediately that this was causing problems. Rather than suffer in silence and wait for the school to deal with the situation, I insisted on ONE person being assigned and stuck to my guns. The problem was quickly resolved, with Eli thriving as a result. Without the experience of seeing what a consistent helper can do, I may have been content to allow the school to resolve the situation in a rather untimely fashion.
Confidence is priceless. I have limitless confidence when dealing with the schools at this point in time. I know without a doubt that I am going to get all that Eli is entitled to, and then some. I am no longer afraid of the meetings that help to define his educational experiences. Because that's what the meetings do, really.
I met with the school social worker today for an hour. We spoke at length about my sweet son and his social challenges, as well as his academic achievements. I don't hide our home life from them, as that would only hinder their efforts. Everything is laid out there--my divorce, the ever-changing occupancy of the house because of teenagers moving out and back in, the pets, the new boyfriend, the neighbors, Eli's ability to hold it all together at school all day only to let it all out at home. And I do know that he works so hard to hold it together, so if he loses it a little at home, oh well. I spoke about Eli's relationships at home with his siblings and how he loves the cats but merely tolerates the dogs. She spoke of how he is very loved at his school by adults and children alike--his inherent sweet nature and ready smile carrying him along. Both of us traded information, some of it uncomfortable to share, but all necessary for his success.
At the end of the meeting, she gave me the opportunity to share what I would like to see for Eli in the coming year. I said that I was frequently reminded of the movie The Incredibles, and a line that has stuck with me since I first heard it. "When everyone's special, no one will be." It was the scene was where Dash was discouraged from showing his talent, to hide it, so as not to diminish others' ability to run as fast as he could. I told her that I would like Eli to be praised for his successes publicly, rather than hiding them. I said, "No one thinks a thing about saying something to the effect of 'Joe is the best climber in the class!' or 'Cindy has the longest, prettiest hair!' but no one says anything like 'Eli can add numbers faster than anyone!'" So yeah. When he shines, I want people to notice, and he does shine in so very many ways. We all have gifts and we are all special, but in different ways. The fastest runner should not be the only one who gets noticed and praised.
Tomorrow is his IEP meeting. I am ready for it, and while I may jokingly say that I am putting on my game face, it's not really joking. I do have a game face, and it's ready to put on, should the need arise.

The Premier Post

Hello! Greetings from the beautiful midwest on this, the 47th anniversary of my birth. I was chatting with someone on Facebook who sent me a message saying he had enjoyed my old blog, Soapbox Mom, and he wondered if I had another. Well, I have thought about blogging again many times over the past couple of years, and what better time than the present to begin anew?


Soapbox Mom was a harsh blog in many ways. I had a lot of anger back then, and projected it onto the biomed parents I came across in my forum wanderings. For those who knew me well in those days, they knew WHY I was so angry. Really, it was frustration with my own world and relationships. They were a handy target. I still feel that some of the treatments that people attempt on their autistic youngsters are ridiculous and sometimes dangerous, don't get me wrong. But I have mellowed substantially over time.


Time passes, and if we are lucky, so do relationships and situations that cause us pain and stress. My marriage disintegrated, not due to the the challenges of an autistic child, but because of alcoholism. Suffice it to say that my husband and I are incompatible. Since our separation, we have both found more happiness in our respective lives, and hopefully, he will continue on building the relationship with our son that we both cherish.


About that son. He has grown and matured since then in ways I had never imagined. He is now 7, in a mainstream first grade class. He excels in writing, drawing and math, though he doesn't care much for reading. There have been invitations to birthday parties this year, and he wants to skip ahead to high school because, he says, "All the ladies are going to LOVE ME!" Too true. He is a beautiful, creative, and sweet boy who constantly surprises us with his budding sense of humor and keen observations.


I still wonder, and yes, worry about his future. I think this is natural, and I try to not fixate on the negative. He has so very many strengths to offset his weaknesses. He is friendly almost to a fault, asking fellow diners in restaurants their names and what they are going to order. He adores infants and will make a beeline for any baby he sees in a store or in the neighborhood, cooing and being generally adorable. When I try to discourage being this way, he counters with. "But mom, I am just being friendly!" And you know, he is right. What kind of world are we living in where people are discouraged from being friendly and neighborly? It's really a sad state of affairs if you think about it much....


Autism is part of my world and my daily life. We make accommodations for this sweet little kid. On the other hand, we expect great things from him as he grows. I am a firm believer that children will fulfill your expectations of them. Expect failure and trouble, that is what you will get. Expect success and greatness, and you will not be disappointed.


One last thing. The name of the blog, Mothership Captain. My house is called the Mothership by the entire neighborhood and our friends. Since I am the MOM here, I get to be the captain. :D You all get to be boatswains, if you like.