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.