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

Archive for September, 2010

Sweetness

So today was up, and down, but I think for a change I’ll tell you about the up.  Frustrated with a million things that needed to be done at home, I decide I need to get away.  The weather was super nice, so I said let’s go to the lake. The kids were somewhat stunned

“Right now?” asked Petra, “OKAY!”

We got our swimsuits and headed to a place where nothing needed to be done except play.  I tossed in some sand toys, and a change of clothes and off we went.  Normally I don’t go because I need to pack a million things, and it’s all too much, but today I decided we didn’t need all those things , but we did need a break.

When we got there, two other families were there, one couple, and one with one little girl, but they all left rather soon after we arrived. So we had the place to ourselves.

It all felt so easy, why didn’t we do this more?  The kids played in the sand and hauled water to fill rivers carved out in the sand built by other children, left for the enjoyment of mine.  They ran back and forth from the waters edge to the play ground, and back, and instead of hovering today, I let them free range.  Their play was a thing of beauty.  All of them playing together, they were queens, kings and princesses.  Each had their own horse that would carry them from the playground castle to the sea lake.  Elijah on Silver, Petra on Lovie and Natalia riding the sweetest little pony called princess.

Today during their perfect play I didn’t mourn the fact that one more pretend stead should lodge at the imaginary stables, nor was autism there. I simply drew in the wonder that is my life, the beauty, the light, the absolute perfection that rolled out before me.  I took off my shoes and laid down on the ground with Micah and sucked up every bit of healing energy from the earth below me, willfully drawing it in to replenish me.

Eventually the wind picked up and we felt it was time to go.  We picked up the mail, and headed home to a less perfect evening, but for a time today I wondered why everyone didn’t want to be me, because there was nothing in my life that was not just good, but  kissed by a divine golden light.

I wish I had thought to grab my camera my phone takes the world’s worst picture.

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 .

Making You Drool (hopefully)

We have pigs. Vlad has offered to come help with pig processing. -Vlad you’re still coming right?- We like bacon and ham.  What makes bacon and ham so good?  Curing.  Either by brineing or smoking.  Kyle’s birthday is on the 26th. I never know what to get him. – hang in there I’m going to piece this all together for you soon-  This year I decide I’m going to get him a smoker!! Practical -kyle’s all about practical-, and useful and it’s a nice luxury item, but we can use it to smoke hams and bacon and improve the product variety we can get out of our pork.  Kyle finds one half price and buys it.  I’m excited to have one, and to have paid less for it, but now I still need a birthday present…hmm any ideas folks?

But before you feel to badly for me -you were feeling badly about my lost present idea right?- look what I had for dinner tonight.

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So last night we seasoned our smoker and spent some time deciding what we would try first? Fish? Pork chops? Someone said smoked hamburgers are good.  We had a pork tenderloin in our fridge waiting to be cut up and packaged into meal sized portions, in our second fridge, so since it was already, not frozen, we thought we’d do pork.  Kyle found a recipe for butterflied pork with dried fruit stuffing (prunes, pears and apricots) soaked in wine (also homemade) and thyme (well rosemary, but I substituted because I hate rosemary). Heading Tim Browns advice that things generally take longer that specified we set the timer and temperature for the high end of the recommendations, it came out dryish, but hey it was our first time.  So I made an apricot and date compote to go over it, with the pan drippings. We served it with home grown fried organic fingerling potatoes, and organic corn kernels.  The verdict, very, very good.  The improvements for next time – reduced cooking time and add some bread to the stuffing, as I found it too sweet, but for a first time I would say-  Success

DSC_0365 It looks like a bar fridge.

DSC_0360Look at all that room imagine the things we can smoke all at once.  We put the roast on the rack closest to the drip tray.

DSC_0359We couldn’t decide what type of wood chips to use, we have Apple, Mesquite and Maple, you could mix if you wanted, but we thought it best to try one at a time to learn about the flavors before mixing.  These are Apple Wood.

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Insert the wood chips

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Set the the Temperature and the Timer (8hours,190f this time)

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Wait until the time has elapsed and insert a meat thermometer.  Looking good right?  I wish you could smell this, a smoker smells like delicious.

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Slice to serve to serve to your family.

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ENJOY!

Gobsmacked at the effort of it all

So here it is.   The one that I’ve been thinking about.  I’ve had a miserable couple of weeks, my brain keeps going over things, and I can’t stop thinking about it.   We have been having an issue with violence in Elijah, so you might see how I couldn’t just put out in the world that my son is suddenly resorting to violence, that he has been cruel both to our other kids (Micah excluded), and our animals, or that I couldn’t  just tell you that I was worried that we would never be invited to be social with another family, that he could never join and extra curricular program, that he may injure one of his sibling seriously,  or that one day he would be a sociopath, without giving you the full story.  I couldn’t risk even those who love us to make a judgment without knowing the road we’re on to improve it.

Elijah has Autism, and one of the main diagnostic criteria of ASD (Autism Spectrum Disorder),  is developmental delay.  While he may be at a 5 year level in some respects, he can be at a 2 year old level in others.  Think about a two year old…they hit, tantrum, and bite.  It’s normal at that age, in fact it can be considered an cognitive advancement they are starting to realize that the have their own desires, and that by acting out they can sometimes control, or manipulate a situation into his or her favor.  It’s also pretty easy to control a two year old, and they can’t really push around kids bigger than them, not so with our big for his age, strong for his frame 5 year old.

Elijah also has impulse control issues, he does things without thinking about consequences a lot.  So when we noticed he was hitting and biting often, when he was frustrated, we tried a myriad of responses.  From quiet correction, full out yelling, time outs, and at it’s climax, when he was tossing Petra around in the pig pen and hitting the pigs with a stick, he got a spanking.  Probably the least likely way to get Elijah to stop hitting when he felt frustrated, I’m sure you see it:  Parent gets so frustrated they hit son for getting so frustrated he hit daughter.  Spanking is a parent impulse control problem.

This was the incident that lead us to talk to a psychologist (a friend of mine), a doctor who wouldn’t give us a referral, a doctor who would, a friend with a son also on the spectrum, a compounding pharmacist who is incredibly knowledgeable about ASD and the variety of treatments there are, a program administrator, and Elijah’s occupational therapist.

You see we’re interested in seeing a biomedical specialist here in town, so our first step was to get a doctor to write us a referral, so we tell our story to the first guys and he says no, we tell our story to a second guy he says yes, we tell the pharmacist, so she can collaborate with the family doctor who said yes, but isn’t familiar with biomedical treatments for patients on the spectrum,we tell our story to the therapist to get his input on therapeutic sessions that will curb the behavior, we tell the story to two friends to get their input, we tell a program administrator the story to get him into The Alivin Buckwald Center (an Autism clinic) here in town, and Kyle and I spent most evenings talking about it and what we think our best options are.

The absolutely emotionally soul sucking problem with having to do all of this talking, is that we don’t get to talk about Elijah, we talk about the problem behavior, over and over and over.  Do you have any idea how how incredibly sad it made me to only talk about Elijah in the worst possible light for over a week, and then find out that we’re not likely to see the specialist for any type biomedical help for over a year, and that the behavioral help from the Alvin Buckwald center is likely a 7 or 8 month wait? Very, VERY, sad.

Our occupational therapist was of great help, and since we’re already with him he can start to implement some things right away, but we also spoke with him about starting another type of therapy called RDI (Relationship Development Intervention Program) which helps spectrum kids learn the skills for dynamic thinking and interacting, giving them the tools they need for friendship , teamwork, employability, and independent living. I think it would be a valuable tool, but I must read through the book about it, before we can commit to starting a program that requires intensive parent involvement from a mom who’s already worn thin on time.  God, finding time to read the book is hard (you may have noticed a few skipped blog posts this last week or two) let alone realistically adding one more ‘to do’ in my day, and tape it, and submit it for review.  And the book is not easy reading either it talks about specific brain functions, deficits, and the difference each cerebral area plays in static and dynamic thinking. Oh, and did I mention how much of the cost of this therapy is covered by the province? 0%, even though it would save the government thousands (millions?) in assisted living, and make work costs in the future.  So you know, it should totally be cheap. ugg.

I’m also about to start calling the specialist’s office and start throwing Kyle’s name around, and the fact that he works for the department of medicine at the University to see if that has any pull.  Basically I need to say, hey were already on the road with biomedical, and my husbands a smart guy who can read a medical review paper, so you wont have to start at square one with us.  I hate games like this I’d rather not play them, it should be equal opportunity for everyone, and the wait should never be a year, think about the possibility of treatment within a year vs. none!  And I hate being pushy, or worse shot down.

So there it is out in the world. Elijah can be mean, were working on it.  Thanks to divine mercy, things this week on the the Elijah behavior front is really good, it can almost feel as though I might have made it all up, but now that we’re moving forward (slowly) there’s no moving back, and no stalling.

No time to note time

Like all of you I would like more hours in the day, or more hours of sleep.  Unfortunately one is sacrificed at the expense of the other.  I can stay up late get the living room vacuumed, read the book that takes way to many brain cells (quick no googling what does the hypothalamus do?) about the new therapy were thinking of starting with Eli, work on my portion of the organic food co-op I belong too (spreadsheet balancing and maintenance), knit something,create a picture schedule, bake bread or muffins, and/or blog, but I can’t parent on that little sleep.  My to do list is huge and I have to give up on many of the things I would like to get to.

Maybe I need to start sending the kids to bed earlier… ohhh lets say 3:30 bedtime should give me enough time to get some of the stuff on my list knocked off, and get in to bed in time to get a a full nights sleep if I gave the baby away.