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 ‘Autism’

Killing Them Softly

When I’m telling people that Kate died,  I never say she passed away.  Actually I kind of cringe at that expression, passed away to where, passed what?  I don’t begrudge others from using it to describe the death of their loved ones, people should say what they feel comfortable saying.  For me its a little too soft, too pretty, too acceptable.   In fact part of me likes the shock that comes from saying that our baby is dead, if I can be perfectly honest.  It’s a particularly difficult chapter in my life, and it shouldn’t be easy to say.  In fact the two most difficult things for me have been Kate’s death, and Elijah’s autism.

Autism isn’t the tragedy that Kate’s death was, in fact it’s hard to call Autism a tragedy, but for many of us, Autism means worrying about tragedy.

Part of what makes Autism so difficult to deal with is the tendency that many kids with autism have to wander.  To make matters worse a lot of kids with Autism seem to be missing the ability to feel fear, or sense danger.  I can think of two incidences with Elijah that makes my blood stop.

One day while putting his baby sister upstairs to bed, Elijah undid three locks on the front door and let himself out, naked.  Thankfully it was summer, not winter.  We lived in Chicago, at an intersection of two very busy roads, Western Ave and 119 street.  When I came downstairs the first thing I noticed was he was missing, and the door was open.  The police were called, and I frantically searched the area asking passer by’s if they had seen him.  The truth was, since he loved cars I feared he was already dead.  Traffic doesn’t stop in Chicago, crossing the street is a ridiculous danger.   To make a long story short he was found safe, and sound, and I was never the same.

A few months later while on a trip to see a Floortime therapist, we were taking Ky’s car instead of the van.  I strapped Elijah into to his booster seat, both age and weight appropriate for him.  A half an hour later while going 70 miles/110km an hour down I-94, Elijah undid his belt, and opened the back door.  Luckily the force of our speed made opening the door difficult, and it shut again.  I pulled over, yelled at him, called Kyle, cried, and belted him back in, and always used the 5 point harness seat.  Death was too close again.

When we lost him in line at Disneyworld while waiting to see one of the 3D movies, Kyle didn’t hesitate for a second to pop up on a rail, so he stood above the crowd, and shouted at the top of his LUNGS: ” Attention, my son with Autism is missing, he has a blue shirt on”, and then gave a description.  In a matter of a only a moment he managed to get to the other side of  a packed lobby of a few hundred people without any concern that he couldn’t see his parents.  A few moments more he may have found an exit, and few more and who knows.

During these scares Elijah didn’t speak more than a handful of words.  If kids are found wandering and are unable to tell an adult who they are, or where they live, they are more likely to be abandoned by that adult, because they are unable to help immediately.  The older the kid, the more likely this is, in fact a wandering 16 year old isn’t likely to be approached with help at all.

A while ago I wrote about James Delory who died  of hypothermia after wandering from his Nova Scotia home.

Adam Benhamma

Today I am a wreck over beautiful Adam Benhamma, Adam wandered away from the people he was with.  The “fading hope” has me feeling helpless.  As I sit here typing this blog out, his family is worrying about whether they will be arranging a funeral tomorrow.  As a mother I’m heart broken for them, as a mother with a son with autism I can imagine it could be me, as a mother who’s buried a child, I hope above fading hope that he’ll be found.  Adams Story

More and more we hear stories of kids with Autism dying due to wandering.  With our collective US and Canadian governments refusing to see Autism as an epidemic, even with a a rate of 1 in 110, and as high as 1 in 65 in some pockets, we should all get ready for more autism deaths.  Autism is killing our children by robbing them of a sense of danger.  Children are dying from incidents that stem from their Autism.   And just like babies dying, there is no gentle way to say that.

Part of me wonders if the outrage isn’t as strong as it ought to be, because it’s not normal kids dying.  These are the weirdos, the kids who bang their heads, the ones who don’t talk, the ones who scream, who hit and bite, the ones who spin in circles, and flap their hands.  The ones whose mothers and fathers love them dearly, whose bothers and sisters don’t care that he/she isn’t the same as other kids, the ones who have a special bond with the family pet, because animals don’t judge, the ones who love back in unconventional ways. We should all be outraged.

Elijah is getting better, he bolts less often, we can keep him engaged more these days, and he’s learning to play with his sisters, so he stays near more often now.  I can look away for a second, and it’s okay.  But when I can’t find him, my heart goes straight back to that place that has me wondering if we’d bury him beside his sister, and what we’d write for his epitaph.

So what can you do?  Other than donating money to an Autism charity?

Parents of kids with Autism are often tired, its an extreme sort of parenting.  We feel like we don’t fit.  It can be hard for us to make other mommy and daddy  friends, because parents would rather their kids didn’t play with ours.    So here’s some of my suggestions of what you can do.

If you are good friends, offer to babysit in their home, so mom can have a nap.  But don’t expect a yes until you really learn what it means to babysit a kid with autism, take the time to learn what the dangers are, are they likely to bolt, drink/eat things they shouldn’t,  and what kind of attention they need.  Find out what sets him/ her off, find out how to calm them, what they can and/or will eat, and how they communicate.  Plan to spend some time with them beforehand, so the he/she trusts you.  Don’t be offended if we come down from our “nap” several times, it’s not that we don’t trust you, it’s just that we need to know our kid is okay, shooing us away is not the answer.  Know that that even the shortest break is appreciated, and if you keep offering help, and you seem to truly be able to handle our kid, we really will sleep eventually.  The reason most of us say no to your offers to help is because we know you can’t handle our kid, we don’t mean that condescendingly, we know that some days it’s almost too much for us, and we’ve eased into it from infancy, it’s important to us that you know what you’re getting into.

Short of that, you should know most of us have been shunned at moms groups, gym class, ballet etc. if not outright kicked out.  Befriend the mom with the odd kid in art class, be friendly, be kind, be open, and check your judgement of what kind of kid and/or type of parents they must be at the door.  Over time maybe invite us over for a playdate?? When that playdate ends with the kids not playing together, toys played with in other ways than their intended use, and with shrieking and/or complete silence, and with the mom hovering over the kids, invite them to come over again!

Short of that, make a meal, shovel a sidewalk, mow a lawn, or volunteer with an organization that makes a positive impact to individuals with Autism.

Short of that, donate your internet space on Facebook, Twitter, or other social media to promote Autism Awareness, Autism reform in your State or Province, or to support a family who is struggling (make sure they are okay with you sharing their struggle).  This month it’s easy, April is Autism Awareness month.

Short of that, when one of ours kids goes missing in your community, help us find him or her.

And today pray for Adam, Adam’s family, and for all families dealing with Autism.   Pray often for fewer deaths, more acceptance, and better programs to help individuals with autism make meaningful and positive contributions to an more inclusive society.

“fading hope” has me feeling helpless.  As I sit here typing this blog out, his family is worring about weather they will be arranging a funeral, tomorrow.  As a mother I’m heart broken for them, as a mother with a son with autism I can imagine it could be me, as a mother who’s buried a child, I hope above fading hope that he’ll be found.  Adams Story
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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.

The post where I ask you for 20 bucks (don’t worry you get something)

The internet is abuzz.  Steve Jobs may have never thought he would change the lives of thousands of autistic kids, but he has.  His devices give voices to many bright, non-verbal kids with Autism, through apps like Proloquo2go and many others.  Parents have been astounded to find that many of their non verbal kids are able to speak eloquently, in full sentences, with proper verb tenses, and correctly using figure of speeches, when given an electronic voice, and those who don’t can learn.  Don’t believe it?  Search #autism into Twitter and I guarantee in less that 5  minutes you find a link to some article about how the i-revolution has helped to improve communication for children with autism.

I have a permanent search for tweets with #autism, and that’s how I found Melissa’s site: The Puzzling Piece. She makes pretty jewelry to promote Autism awareness and support autism charities, and she has this amazing promotion. If I sell 60 necklaces or key-chains she’ll send me an iPad for Elijah, free.  So I emailed her today, I wondered am I even eligible as a Canadian?  Well, that woman must have an iPhone because I got a reply in minutes.  Yes, I could take part, she said.  So then I had to think, do I know 60 people who would buy, so we could get an iPad for Eli?  I don’t know?  But that’s where you come in, you tell me.  I’m giving it a shot.

I know, I know what some of you may be thinking.  Elijah is verbal, aren’t you just being greedy?  What does he need one of these for.  Allow me to tell you why we think an iPad could help Elijah, even though he talks.

Elijah didn’t start really talking until he was three.  He has come a long way with biomedical intervention and therapy.  He has worked hard, and we are fortunate to be a family with a verbal kid on the spectrum.  He still has a lot of catching up to do, but he amazes Kyle and I all the time with the huge progresses he makes.  Currently Elijah works with Kathy-Jo Simmie, a spectacular speech therapist here in Saskatoon.  Speech therapy isn’t covered, so we pay for it out of pocket.  It is expensive, but so worth it.  He loves Kathy Jo,and he works there on pronouncing the letters he has trouble pronouncing, r,s,ch, and l mostly, he works on modulation (that kid has one volume: LOUD and one speed: fast), eye contact, and social interactions such as turn taking, how to have a back and forth conversation etc. etc.  It’s wonderful, but we only go twice a month.  The iPad has an app for that.  There is a speech therapy application that can help with pronunciation, pitch, speaking speed, and modulation.  Kyle and I work with him all the time, but plunk that kid in front of a screen and you have his undivided attention. I think the iPad can help with speech therapy and to help stretch our dollar.

Some of you know Elijah, so it goes without saying that he isn’t always the most easy going.  If we make a change of plans or take him somewhere where he’s never been, he doesn’t always know how to deal with it.  Often that means melt downs, tantrums, inappropriate behavior, and that famous high pitched, awful scream he has.  One of the ways we help with new situations (and old ones where that are difficult) is to write a social story for him.  Essentially, a social story is a “this is what’s going to happen and this is how you behave” type of story.  We personalize it to him using pictures from the internet and we write Elijah’s story. Then we print it out and laminate it.  We pull out the stories we need when we need them.  Here is an example of a social story for Going to Art Class.   It would be magic to have all those lovely stories tucked away in an iPad so that we could “pull” out the ones we need at any given moment.  Elijah’s and my stress would be greatly reduced when I have to to make an unexpected stop at the grocery store.  He could read “What I can Do When Plans Change” on the way and “Grocery Shopping” in the cart.  There’s an app for this!

In Occupational therapy, Eli is the obstacle course star.  That kid can climb/swing from/wiggle through anything.  Elijah may be super at gross motor skills, but his fine motor skills, particularly handwriting, is bad (even for a boy:)) Getting him to sit and practice printing goes one of two ways, he endures it reluctantly to get to the next task, or he refuses, by throwing his pencil, writhing on the floor, or hyperventilating.  But, put a touch screen in front of him and he will trace paths or letters with his fingers willingly, without knowing that he’s working on a problem area.  We know this from the little tracing some of his DS games require, and from a couple of games on Kyle’s iPhone.  The iPad’s larger screen means that he can start tracing big images that continually get smaller as his skill progresses.  And yup,  you guessed it, there’s an app for that!

There are also apps aplenty that will help with our homeschooling curriculum, math, social, reading, etc, and there are also apps that help kids, like Eli, who don’t understand social norms.  Like: where we need to keep our voices down, why we need to look at someone when we talk to them, how to say hello and goodbye, how to ask other kids to play, and how to politely tell other kids when he needs some space to be alone.  Elijah has learned thousands of things from Kyle and I and his sisters, and we continue to find real world ways to teach, and interact with him.  I think that balance is crucial, but I also know that when Elijah figures it out for himself the lesson is more lasting than when I drill it in a million times.  He practically taught himself to read from Starfall, Key Skills and PBS kids games.  Oh sure, I work with him at the kitchen table, but he is far beyond Petra’s reading level, and that is a testament to his brightness, and his own quest to learn at his own speed on the computer.

All of that being said let’s not overlook the obvious entertainment factor.  Because it’s full colour, and has a large screen it makes the perfect picture book e-reader, we can download Lego building instructions and he can independently play for hours (he loves Lego), he can watch movies, and play games on it, perfect for when the line up at the store is too long for him to endure.  One iPad in the house means learning how to share, and take turns with his sisters (I’m not sure if there’s a app for that).

These are the reasons I can think of to impress upon you why an iPad could be beneficial, even to our verbal guy.  I’m sure I’ll think of more later but these are the big ones.

So here’s where you come in.  You knew I had to be getting to this from the title, and that fact that I told you if I sell 60 of these:

From the website: NECKLACE This unique handmade, one of a kind puzzle piece is made from diachronic glass and measures 1 1/2 x 1 x 1/4". It comes on a 16" or 18" rubber cord, attached by a lobster clasp. All necklaces arrive individually packaged in a powder blue gift pouch. This necklace was made with lots of love and passion. My wish is that you enjoy wearing it as much as I enjoyed creating it.

or these:

From the website: KEY CHAIN Made of alloy and weighing 1.8 oz., this double barrel clasp key chain is worth its weight. It is a sophisticated key chain that does not require words to communicate its cause. For all the men who love a child with autism this one is for you.

We get an iPad for free.

If neither of these are your particular style or taste, but you would like to help, you can purchase a necklace or key-chain and I (you) will donate any unwanted jewelry to Autism services in Saskatoon where they will either give them to Moms or Dads who would love something like this, or sell it as a silent auction piece.  You can indicate if you want to give it away, or have it auctioned if you’d like.  Or you can keep it and give it away as a gift to someone you know. 1 in 110 children are affected by autism and that means you likely know another family with someone on the spectrum who would love it.  If you run a business the key chain would be perfect for tacking up on a corkboard, or to have displayed as a plant charm to show your customers that you are  business that supports autism awareness.  Furthermore if you would like to purchase jewelry under your business name, I would be happy to write a small blurb about how your business helped Elijah earn a free iPad that you can put in your blog or newsletter.

Okay, do I seem slimy sales-pitchy?  I’ll stop now.  I contemplated whether this was worth doing, if asking for this was going to make me seem selfish? greedy? I’m not sure of the word I’m looking for here.  I also wondered if I should even bother to see if I could sell 60 of theses, because in April I’m going to campaign for funds for Autism Service’s big Gala in Saskatoon.  They have been so good to us, and they deserve generous financial support, and so I will be asking for your money again then.  On the plus side, since our kids aren’t in public school you won’t ever have to buy chocolate covered almonds or wrapping paper from me, and this iPad fundraiser benefits our family solely.  Ask and ye shall receive they say.  If I don’t make 60, I don’t make 60.

Both pieces cost 20 dollars USD each, and are well worth it.  If you would like to order one please send me an email, make a comment in the comment box,  tell me personally, or send a letter to Erron Anderson, Box 841, Dundurn SK, S0K 1K0. I will collect cheques that you send me and place the order when there are 60, or once it seems that I reached the peak amount of interest to buy if there are fewer.  I will absolutely keep you posted here on this blog. I know it’s likely the worst time to be campaigning to get people to spend money, but maybe you have some extra Christmas cash burning a hole in your pocket?  And if it’s not in your budget, I get that, it’s okay.  If  it’s not in your budget, but you would like to help make this happen for us,  you can to pay this link forward via email, write your own blog entry or copy this one to your blog, post it to your facebook page, or Twitter account, and I’m grateful.

We are not rich, and we are not poor, but an iPad, though we’ve thought about it, seems a fairly large expense, and so we’ve decided it is too far down the list to think about getting one.  I think it’s wonderful that Melissa and The Puzzling Piece are going to make iPads happen for families who will benefit from them, even if we don’t end up being one of them. Kudos to you!!

Editing again to change payment info:

Previously I had to take the order from you, by cheque, paypal or e transfer.  Now the easiest way is to purchase directly from The Puzzling Piece! PLEASE don’t forget to add in the notes that you are purchasing for Erron Anderson’s Fundraiser for Elijah Anderson.  This way the item is shipped directly to you, not me, and then to you, and we still get credit.  For those of you who have already ordered, I’m sorry this option was not available to you at the time.

Here is the letter Melissa sent me on how to order (if you do order will you please comment or send me an email, so I can track our number of orders?):

Hello to all the iPad Challengers-

I have made a decision to try and help you all out.  In order for me to do this, I am really going to need you support!  Your friends, family and donors can now place their order for the necklace or key chains by going to www.thepuzzlingpiece.com.  Many of you have been asking for this to happen so I have conceded!  The only way this can work is if your supporters put your full name in the notes at checkout.  There is a spot on the pay pal checkout page where they can leave a note.  I will have no way to track your sales unless your supporters do this.  Please, Please, Please make sure your people do this.

We are proud to announce we have had 4 people complete the challenge.  Keep up the hard work and we are really excited to send your children a brand new iPad.

Please have anyone who writes you check to have it written to The Puzzling Piece.  Just so you don’t have to ask how many have been sold for you we will send an update on the 15th and the 30th of every month.  If there has been no change we will not update.  We will update any winners the day the goal is met.  Also just remind your supporters the challenge only includes the glass necklace and key chain.

This Challenge has been going so well we just don’t want to waste time!  Good luck to everyone.

All the best,

Melissa Winter

President-Mom

The Puzzling Piece

201-602-0547

www.thepuzzlingpiece.com

Fighting for Someone Else’s Kids

I like a good fight.  I don’t like having my feelings hurt, but I’m all for a good fight for the sake of my children.  A while back my Autism Support worker called to say she had recommended my name to be a part of a provincial forum on policy change.  YES! I was excited.  I want to be part of the group that makes it happen, that shines a light on our province’s Autism support policies.  Weeks go by, and I figure my name wasn’t picked, oh well, too bad, I guess maybe some other time.

Then on Friday, I get a call asking if I would like to attend the meeting on Monday night.  Yes, Monday of the next week three day away.  That same day, another phone call, they needed my address, so they can courier me a letter.  I don’t have an address, so I had Kyle email her his work address.  They were going to try and send it one day express, so that it would be there that day, or Monday.  It never came.  But I did get an email to say it had been couriered, and in case it didn’t come they sent it as an attachment.  Ummm… hello?!?  Seriously.  Why courier it then?  Please tell me that the government doesn’t feel that  it’s okay to spend 25 bucks to send me a letter they can send as an attachment, but feels it has the right to quibble over whether my compounded prescription can be covered?

Here is the letter: Focus Group for ASD and FASD

The meeting consisted of a group of  12 parents, some of us were alone and some were parent couples, voicing  concerns for 9 families.  It started with the facilitators giving us a questionnaire, where we had to write in our answers.  There were 5 or so with questions like: Describe your child’s limitations? What are the challenges you face providing daily care?  Describe what types of things we could add to the services offered to help with your child’s emotional, mental, physical, education and/or spiritual well being? All with about 2 inches of space under them for filling in answers.  It was explained that we would be given a bit of time to fill them out, and then when it seem like most people had stopped writing, we would start the meeting (it started at 6:30 and had an end time of 8:30) .  I think they were surprised to see people using the backs of their papers, and eventually told us to wrap up because we would run out of time.  Now why in the world would they not email that kind of thing to us ahead of time?  So we could compose clear answers. The kind without the use of arrows pointing to the rest of the answer scribbled on a separate spot on the paper, and so that the answers could be clearly constructed,well thought out, and made with input from both parents/caregivers.  Shame on them for not figuring that out, or was it a time wasting ploy? I hate being all conspiracy theorist, or contemplating alternative motives, I want to believe it was just an oversight, I’m just not sure.

The group discussion started with a question about the services we use and find helpful that are already covered by the health ministry.  That was summed up quite quickly.  Then on the deficits.  I have to tell you among parents there was no fighting, no one disagreed with anyone, and no one felt anyone brought up an illegitimate concern.  In fact people would raise their concern, and most people would bob their heads along, or shake their heads in disbelief.    It seems our government  is more keen to provide group housing and make work projects for less capable adults, than they are to providing the types of therapy that will help these kids, at a time when they are most able to benefit from therapy, therefore becoming more capable of socialization and standard education, thus making them future tax payers instead of future tax burdens.

If you want an example of ridiculous policy here is one from one mom.   A little boy makes use of a weighted vest to help with behavior modification, he goes to daycare, the government pays the daycare an allotted amount of funding to provide the little boy with a vest, specifically fitted and weighted to his needs.  When the daycare later says they are not capable of the type care the little boy needs,and they should find daycare elsewhere, the family can not transfer the vest to their new daycare because…wait for it… it belongs to the old one.  The family can not apply for new funding for a vest because they have used up the allotted funds available to their family in acquiring the old vest.  Now a child specific vest sits unused in a daycare center, and because people are weird about what’s theirs, the daycare won’t give it up, all because through current government rules the funds are sent to the daycare not the family, and so it’s the daycare’s vest to do with as they please.

After many well spoken arguments presented with feeling, emotion, passion, and drive to get what we need, we are told that the information gathered from our meeting, along with info gathered from parent groups, like the one we were in from Regina, LaRonge and one other place I’m not familiar with, nor can remember, will be combined and written up into a report.  Then sent to the ministry for review of policy.  Well in my opinion,  there goes our voices,  there goes our power.  I just don’t believe that my statement that we NEED!! funding for basic therapy, in order to get these kids to a place where they CAN behave and socialize in a more normal way, thus, giving them the best chance to feel like they belong in our society, is going to be bulleted to something like this.  – Parents feel there should be  funding for Occupational, Speech and Physical therapy, as well as funding for other therapies of their choosing.  We don’t get to know when our information is presented, or what kind of change will come of it until/if there is a policy change.  Hey! SASKATCHEWAN POLICY MAKERS!!  How about having parents directly involved in policy change?  How about instead of sending someone to report back to you with what parents are saying, you come hear it for yourself!!  Come on!  Please at least look me in the eye and say no.

I never want to go into a meeting with my dukes up, no one wants want to help someone who seems impossible.  I never want to go in to a meeting completely passive either.  From now on we go in with our arms down and our fists curled.    Our province won’t release prevalence data, they say there is no way to know when a child is diagnosed. Funny thing, ask any parent when their kid was diagnosed and they can tell you, I bet a majority can give you a date and what the aproximated time was too. It’s a life altering thing.  I know from Autism services what the Saskatoon birth rate is annually, and using the commonly held belief that 1 in 150 children fit on the spectrum somewhere a good guess on how many kids should be referred to Autism services can be extrapolated.  Sadly Autism Services is seeing nearly 5 times the “should be” number come through it’s doors.  Many parents believe that Saskatchewan Autism rates may be linked with the higher than national average rates of MS cases found in our province, but with out prevalence data there no way to correlate.  The Government is HAPPY to tell us that they are investing another 5 million dollars for ASD and FASD, but without prevalence data there is no way to know what that equates to, or how it disperses per child, let alone how Saskatchewan compares to other provinces.  To me it seems that prevalence data may be being withheld on purpose.  There goes my inner conspiracy theorist again.  It hardly seems grand to dish out and extra 5 mil, if everyone were to find out that it needs to blanket thousands more kids than one would think, or that something in our province is amiss and we are facing a diagnosis epidemic.

It feels like I’m fighting for someone’s kids.  The change is slow.  I wonder if Elijah will have time to benefit at all.   I said in the meeting, on some level it’s okay if it’s all for someone else because someone needs to start the push, but it feels unfair, and if we don’t start working on it now with the way Autism rates are rising, the province is going to have a much bigger fight in the future, so they ought to start setting it right, today.

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 .

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.