living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Posts tagged ‘worry’

He Bit My Face: Losing Touch With God

My blog has been neglected.  I had a goal of posting once a week.  Unfortunately my last few starts have been such heavy and controversial topics, I’m intimidated to finish them, begin writing them, and most certainly to publish them.  I’ve got works in progress about timing for sharing pregnancy news featuring baby death, one about food and why we’re working at self sufficiency featuring nutrition for Autism symptoms, and one that has been floating in my head about Autism, and its suspected causes, featuring why the vaccination debate will never go away.

In the mean time, I’ve met this amazing mom blogger who inspires me.  Somehow, she manages to write everyday.  I don’t know how she finds the time.  I would accuse her of making her kids up, but she speaks from a heart that undeniably has children.   I highly recommend her blog if you have kids, have a child with ASD, have had a baby die, or if you have multiples.  Can you believe we have that much in common?  Oh, and both our husbands are teachers, and are prince charming handsome.  How is that for unbelievable?  You can blog stalk her here, Four, plus an angel

Her posts aren’t always very long, but always packed full of head nodding and the like, and her short post today has inspired me to just write a post, partly on inclusion too, or more like exclusion.  Today she writes a letter to her storytime mom’s group telling them why she’s not going back, and it’s about acceptance.  It got me to thinking about our playgroup experiences, why we quit before we could be kicked out, and how those moms choose not to let me into their circle because Elijah refused to be a part of the music circle.  I was the mom with the weird kid.  This was before our Autism diagnosis.  I wonder how many of them assumed there must be something wrong with my kid, which then got me to thinking about this time at church, which is what this post is about:

Somehow I’ve become a lapsed Catholic.  There was a time when I wondered how people could let that happen.  I was self-righteous, I figured if I could make it to church after Katie died, after having twins, and later with two toddlers and a baby, there was no good reason for anyone else to allow their faith to lapse.  That was until Autism.

When we packed up and made the big move to Chicago we figured we would find community at church, and we did meet some great friends in the young families group there, who are friends still.   Though we were going through the gauntlet with Elijah,( two and a half to three and a half  was my own personal hell) we continued to go to church every week.  He couldn’t sit still, he couldn’t keep quiet, he wouldn’t play quietly during the service.  I could feel all eyes on me when he would scream, run away, or otherwise misbehave.  I was embarrassed.  I couldn’t understand why my kid was so unmanageable.  I was strict, I would glare angrily over at Kyle when I felt he wasn’t doing enough to keep him in line.  I wanted nothing more than for him to be like the other kids there, and I figured by continuing to go every week he would eventually learn.

One Sunday, while sitting near the front, I was holding Elijah, who was trying his best to break free, so he could run around like Max from Where The Wild Things Are.  Frustrated that I was stronger than he was, he screamed, and lunged forward and bit my face HARD, I had lingering teeth marks in my cheek.  I was mortified, people saw, and I imagined they must think, that he is either the most unruly kid in the world, or I was the worst parent.

Soon after that we stopped going to church.  I needed the break.  Somewhere in that break we got a diagnosis of Autism for Elijah.  Sometime later we went back one Sunday for a service.  While taking Elijah out for a walk during the service in the foyer, I ran into a lovely woman who said we had been missed, and wondered what had been keeping us away.  Upon telling her we had been coming to terms with an autism diagnosis for Elijah and we needed some distance,  she said,” Oh, we thought it might be something like that. ”

I died a little inside that day.  It was obvious to everyone that my kid was damaged, I wasn’t ready for that.  I wasn’t ready to know that people were armchair diagnosing my kid with various neurological disorders, either.

Shortly after that we were packing up and moving again.  We didn’t do much to find a church.  The Catholic church believes that church should be experienced as a family, so there’s little in the way of children’s services.   Besides I’m not sure if Eli could go to an unparented children’s bible study, or if he’d be too much, and we’d be kicked out of one more thing.    He doesn’t do mass so well either, it’s too long for him, and doesn’t hold his interest.   We could go to a more intresting chruch, one that’s louder, has more music, a better program for kids, but I don’t want to, I feel like I’m a Catholic.  So now I’m a lapsed Catholic, because I don’t feel like we can go to church.

I miss  going to church, I miss the communion with God, I miss the quiet moment dedicated to prayer.  I miss believing.  Over time , I’ve come to worry at the possibility of no God.   In some small round about way Autism has stolen my faith, along with my energy, patience, and the parent I imagined I would be.  No God means no Heaven, and no Heaven means no future with Kate.  Autism, it seems, is slowly stealing her away as well, it’s too unfair. I pretend I still have faith. I cling to it with hope, that in saying it out loud it might make it true, but I worry about nothingness with a dread I can’t even begin to explain.

So I stand at this crossroad wondering what to do.  Give up being a Catholic for a church we might integrate into better, give up church, or start going to a Catholic church again and pretend the eyes on me aren’t there, when Eli starts making sound effects during communion prayers.  I’ve been standing here for some time, and I imagine I’ll stand here a bit longer, losing my faith all the while.

Don’t Ever Do That…Unless I Tell You To.

So I’ve been trying to blog weekly.  So far I’m failing.  I have a couple of half written posts in my drafts, but instead of finishing one of them I’m going to tell you about our escapee pig.  Not the first time escapees, those ones are in our freezer now, but the Tuesday escapee.

Tuesdays are the worst days for being busy, we skipped art class because the kids had been sick the night before, but we still had Speech Therapy, Ballet, Grocery shopping, and I volunteer as a parent adviser for a group that counsels to parents who have recently received a diagnosis of an Autism Spectrum disorder, all back to back .

I can never seem to get us out the door without rushing despite my best efforts, I honestly think my kids think that HURRY UP , WE’RE LATE means: okay guys it’s time to go now. Now this Tuesday was unusual, we were running short on time as usual, but we were about to leave with enough time to get where we were going without the rushing. Yay!

I was putting winter outerwear on the kids (isn’t that the worst about Canadian winters?  Needing an extra 20 mins to get dressed to go out) and I had Micah on the floor.   Dash, our Jack Russel, was barking like mad to be let in, and I was annoyed by it as I had just let him out.  I tell Petra please let Dash in, and so she flings open the inner door and starts shouting “Oh no, Oh no, OH NO!” From where I was standing I look out the screened window of the outer door expecting to see a person standing out there perhaps, and see nothing.

He’s biting her!” Screams Petra, her being the new puppy Audrey.

Dash?,  I think, so I take a step forward and this is what I see, two dogs and our pig waiting to be let in.

 

After we let the dogs in she just stood there waiting for her turn

The pig is not a pet, she’s livestock.  Not being in her pen means we are no longer not late. I have to coax her back.

Pigs are Smart.  They don’t do much they don’t want to do.  She also weighs about 100-130 lbs: I can’t lift her.

Darn! I spend a lot of time trying to convince that pig to get in her pen.  All the while thinking about how we’re going to be late for speech therapy, where we pay 120$ an hour whether we’re there or not.  In the end she’s happy to follow me around like a puppy, but I can’t get her back in to the pen, even with the yummy slop bucket from the house.  So I start packing the kids up to go.

Well that pig hung out with us the whole time running towards us and away from us, and eventually as I’m trying to do Micah up in his car seat she tries to get in our van on the other side with the kids.  Ahh! What can I do! I’m on the wrong side and she’s halfway in already.  Crap!

I’m pausing here, to remind you of this: Gobsmacked at the effort of it all.  Remember Elijah kicking our animals?  Remember me all worried that he was mean and just didn’t get it?  Well that pig is halfway in the van, the kids are shrieking in the back that she’s going to get them and what do I say?

KICK HER ELIJAH! Kick her in the face, so she’ll get out!  Reluctantly he did, and she got out.

Yeah…….Nothing like telling your kid to do something you told him to never do, never EVER do!  I was so worked up about him and those animals, and in the end I’m shouting at him to kick her, in the face no less.  Just goes to show you never know what life is going to throw at you.

After buckling the baby in I went around the other side and tried to buckle the kids in and that pig tried a handful of times to get in that van.  She really wanted to be where we were.

Have you ever driven out of your driveway with a pig running her top speed, tromping through deep powder, snow spraying from her sides as she tries her best keep up with your vehicle, as you hit the gas hard, so as to leave her behind before you hit the road, all caught in the the frame of your side mirror?  I have.

I was sure we’d have no pig when we got home, but we live in Canada and that cozy hay-lined lean-to and full feed trough was too much to give up and go wandering.  When Kyle and the kids got home she was snuggled into the hay of her bed and I’d never know she had escaped if I hadn’t been there to see it.

No Friends = Broken Heart

The Gap that Elijah lives in seems to be getting deeper. The difference between him and his peers is becoming a very obvious thing. Not just that busy two year old, but that not quite normal five year old. Elijah isn’t the poster kid with Autism (no one is) his hyperactivity is another part of him, not an Autistic trait, and its so big: he can’t sit still, he can’t concentrate on tasks, he can’t not be moving, it’s exhausting

For the last year he’s always been the busiest kid in his swimming class for kids with Autism. People notice right away, people make judgements, or they’re not sure what to think, but they notice. Always busy, always running around, sometimes not listening to directions, sometimes he gets on a path and gets rough or over excited, sometimes he grabs at things or people inappropriately, and sometimes it all goes to hell, and he pulls a tantrum with low register crying and high-pitched screaming.

Having been in Saskatoon just over a year we’re just on the verge of making some good friends. Petra can find a best friend in 2.5 seconds and Natalia will happily tag along. Elijah though is hard, not really one to make conversation, or know exactly how to make a friends, he often just plays by himself. Lately though, he has been trying, but he’s often too close, and too loud. His “friends” have to play his way, and be able to tolerate his scattered train of thought, his loud voice, and be tolerant of the fact that he’s all of that, and be able to get Elijah to back off when he’s overbearing. Tough gig for another 5 year old. So right now Eli has no friends.

It’s always made me sad, but I wondered if the sadness was mine, that it didn’t really bother him, and that I was the one that felt he needed friends. Then he spontaneously drew me this one day before therapy.

Elijah has speech therapy on Tuesdays and Petra has ballet/tap. He drew this because according to him: His class has no friends, because he has no friends, and Petra gets to go to dance and have friends. Then later he tore it up. I think he realizes that he doesn’t have friendships. I liked it better when I thought he may not have noticed. I feel so sad for him. I’m not exactly sure how to help him make friends.

You see he can’t really follow a structured program, his swimming lessons are one on one because in a group he wouldn’t be able to follow along, or he would distract the other students, or he would need so much attention that the teacher wouldn’t be able to effectively teach the other students. Petra and Natalia have ballet and they have made little friends from among those girls, they also play with the kids that come to my natural food co-op sorts, and with kids that have come to our house to visit. Elijah attends a one on one swim class, him and a teacher, it’s great, just what he needs to learn how to swim, but it doesn’t allow for any peer interaction, and it’s the only class offered to kids his age through Autism Services. Kyle and I have been racking our brains to think of an activity he could join with other kids. Soccer?, no, he’ll run away or into other kids, Cubs?,no, we’d have to find a group that would take him and I can’t bear being kicked out, Dance?, no, he wouldn’t follow instruction and I don’t think he’s interested, Horseback riding?, no, not very social and the only place that offers therapeutic riding is 2 hours away, Cello?, Could he follow a class and sit to learn?. I just don’t know. Today I signed us up for a home schooling art class, the teacher has had autistic kids before, but still were going to the first class as a trial. I hope it goes well it would be nice for Eli to have another ‘something’ to do.

I want so much for him to have as normal of a childhood as possible, I still hope that he will work hard, I will work hard and he will be just a bit odd, but that he’ll go to university, get a job, move out…be independant. I want him to look back and think: I made because I was given every opportunity to be treated as everyone else, to be treated as a person, as Elijah, not just as someone with Autism. But more and more I wonder if this is possible at all. His quirkiness makes it impossible not to tell people, it’s obvious that he’s not just a normal kid, and once you know he’s not normal, it’s very few people who can treat him in a way that he needs to be treated without any condescending-ness, or judgment, to engage and share experiences with him. Most people just sort of avoid it all together because they’re not sure how to be around him. When people ask how to be around him, it’s a hard for me to give them any one set of rules, everyday is different. I am grateful for those who do want to try though, really very grateful. I wonder if I’m any good at being what he needs, and, oh how I want to be.

I feel so inadequate these days. I know how to provide the things he needs, a home, food clothes, even extras like toys and video games, but not the things that make life so wonderful. Friends, hobbies, the opportunity to try new things. I can’t just go plunking him into groups where he’ll fail, and I can’t keep him at home to be his only friend. I used to think that I would make it work, that I would do whatever needed to be done to give him the chances to grow and work towards as full a life as possible. But what do you do when you don’t know what needs to be done? What do you do when you see yourself failing and don’t know how to make it better.

Some days when I’m feeling particularity sorry for myself I wonder if we have the worst kind of Autism. Now, I know we could have it worse in all kinds of ways, but I wonder if the worst kind may be the kid with potential. The worst kind because if I don’t find a way to hone his potential then it’s my failure he’s not more.

It’s getting to be that very soon we’re going to have to explain to Elijah and Petra that he’s different. To put it all on the table, so to speak. I know they have heard us toss around the word Autism, but neither of them really knows what it is or what it means in our family, but it becoming obvious, even to both of them, that he’s not the same. Today Petra wanted to know why she couldn’t join Elijah swimming class, and why we we’re looking for another activity when he already get’s to do swimming and therapy, and she only gets to do dance.

Well there’s a chicken in my sink that needs plucking. That’s as good a way, as any, to end this, since I don’t really have any neat wrap up.

On My Mind

Kyle says I seem grumpy today.  I probably am, here’s whats on my mind.

Elijah got in to see the specialist early, really early.   So thanks for prayers and well wishes sent out int the universe.  I’m really excited to have a guide to help us through all of the biomedical treatments that we’re sort of shuffling through on our own.  While I’m relived to some how have jumped the line.  In the end it’s not going to be like getting anitibiotics for an infection.  His autism is not going to ‘clear’ up.  I wonder is it going to be like this forever? Will Elijah have meaningful employment? Friends? Go to college? Fall in love? Get married?

Today while sitting while Petra did ballet class with a few of the moms I knew from P’s last class.  I was asked if the littles were in Kindergarten this year.  I said no and also for the first time mentioned that Eli has Autism, and that we felt he would benefit from home school.  This lead to them to ask all sorts of questions.  About cause, vaccinations ect.  Controversial stuff, and also some general, well, how bad is it for him type questions. I don’t mind them wanting to know, I just was a little unsure about how much I wanted to share about my beliefs about cause, and about Elijah himself.

And on the subject of Petra’s ballet. She was picked for the competitive class. We’re proud of her.  Now she’s just 5, so I thought it was a class for the girls who were good and they taught competitive dance to get them ready for competition next year.  I guess, like  the A string of dancers.  I struggled with putting her in this class, but she wanted to so we signed her up.  It’s a combo class, so we had to buy tap dancing shoes and new ballet slippers since her feet grew.  Not just any kind specific shoes, and they don’t come from Payless.  And today I found out she does indeed dance in two competitions one in Moosejaw and one in Calgary, so hotels and travel costs and competition shoes.  uggg.  She was so excited today though, she loved tap dancing, and she gets to dance Cinderella in ballet class.  Now she was told that a few girls who work really hard will get principal roles.  Yikes, now as grown- ups we know that’s not exactly the way it works.  She could work her tail off, and still not measure up.  I’m okay with that, and somehow I want her to be balanced enough to be okay with it too.  Since it a 5-6 year old class likely the older girls are going to get the roles.  I’m worried she going to be heartbroken when she doesn’t get to be Cinderella, even though she tried really hard.  I’m also worried she might get a principal roll and she’ll be under all kinds of pressure to help win a competition.  Man, maybe I should have said no to the competitive class I’m a wreck about it.

And Lastly,Kyles first class of the year was today.  Summer is over and he’s back to needing to be at work and I’m back to being the stay at home parent.  Time to start using Google calender again.  Our weeks are busy and I need to schedule around work schedules, and dance classes, and swim classes, and therapy appointments.  These are the days of lighting weeks and slow days .