Our Autism Story Part III

It’s been a long time since writing about our story.  You can find part I and II up top under “Silas’ Story”.

Time went on and Silas’ few words that he had started speaking never turned in to more words.  I kept waiting for him to talk to me but it just wasn’t happening.

When his little brother, Isaac, came along, I was astonished at how different he was.  Isaac was talking to me, cooing and wiggling and looking at me in the eye.  What a different child I thought.

Silas started showing signs of being someone incredibly smart.  He first learned all the animal sounds, then he quickly learned his colours, then shapes, then it snowballed from there.  He picked up things so quickly, it was so easy to teach him anything.

My mind is really quite blank about the next year.  Silas was just going along, not talking, not really doing anything kids his age were.  We had found out that he had a peanut allergy and our world was rocked.  I was in absolute despair about it.  I cried and cried and asked God why.  It was awful.  My little boy could die from something as simple as a peanut!

I remember being quite the hermit.  We had moved in to our first home that we could call our own.  Silas had his second birthday in this house and we are still here.  Looking back at the blogs I wrote at that time, it’s so obvious he had autism.  He just wasn’t talking well.  He was echoing everything I said.  He was telling strangers that he loved them, spinning things constantly…still.

He would sit in front of our front loading washing machine (he called it a water fan) and have his breakfast while it spinned.  I got a lot of laundry done.

I was in the fog of being a mom of two children…two babies practically.  I noticed things about Silas that were so off but he would SNUGGLE!!  I had my facts wrong.  He snuggled me and I thought kids with autism never ever did that.

I was also scared that if I went online and looked it up, I would freak myself out about nothing.  Jenny McCarthy had just come out with her story on Oprah about how she “cured” her son’s autism.  I understood some of what she was saying but it all didn’t fit.  Autism just remained at the back of my mind.  My son was definitely delayed, we had definitely different but so was I when I grew up.

Finally, as I was on the phone with my sister Jill, telling her about how many tantrums Silas was having all the time she told me I should go to the doctor to just see if anything is up.  She meant something physical but I know there was something else in her voice.  It was finally someone I trusted, telling me that they also noticed something different about my son.

On to the computer I went.  I typed in “autism symptoms” and as I was reading I burst in to tears.  It was time to call the doctor.

I took Silas to my GP very shortly after.  Thinking ahead, I brought along his very favourite toy.  Something he called his “spinny toy”.  I guess it just had a good spin to it and he loved it to pieces.

After examining him and saying nothing seems to be physically wrong, he maintained that he didn’t think Silas had autism.  Then I passed Silas his spinny toy and the doctor changed his mind.  He didn’t like the way Silas looked at it, something was “off”.  Time to go to the pediatrician.

Silas performed great for the pediatrician.  Upon going in he dumped out a bunch of lego and started lining them up.

It was a hard conversation with that man.  I didn’t want the power of suggestion to have him misdiagnose my son with autism.  I told him I saw red flags and I just wasn’t sure what to think.  He finally just made me say it “what do you think is going on with your child?”.

“I think he has autism.”

I was right.  The man went on to say that he was sure Silas had autism.  He handed me a box of tissue and began telling me all of the things he saw in my son after 5 minutes of being around him.  Symptoms I didn’t even know about.  I didn’t cry, I didn’t need those tissues.  I told him I was expecting it.  No problem, lets just deal with this.

After filling out NUMEROUS forms I was sent on my way with almost a new person in tow.  It didn’t feel like Silas anymore.  I kept seeing this new disorder, noticing all the things I didn’t see before.

An old friend of mine works in that building.  I’m the kind of person who needs people.  I need to talk, I need to share, I need people around me with anything.  I went to her office and walked in the door.  She looked up to me to say hi and I burst in to tears.

“Silas has autism.”

I don’t know how long I was in that room with her for, or how I managed to get home.  I do remember picking up Isaac from Leanne’s house.  Her mom was there watching Lucas and was nice enough to watch Isaac too.  I cried to her as well.  I cried and I cried and I cried.  When I got home I laid down on my kitchen floor, face first in to the cold wood and I screamed my face off.  I screamed until my throat hurt.  I screamed until my tears were dry.  Until my head pounded.

I remember my mom telling me about a friend of her’s who lost her daughter in a car accident.  She told my mom she would wake up feeling peaceful for a short short moment and then the rush of the pain and reality would come back and stab her.  I knew what that felt like now.  That was the hardest time of my life.

More to come….

My Neuro-typical

I often feel guilty that I don’t write as much about my sweet little Isaac as I do about my Silas.  I guess that’s because I don’t really need to raise awareness about neuro-typicals and find support networks.

Although, sometimes having an NT son is harder than one with autism.  But only sometimes.

Right now I’m sitting on the couch, still protecting my dog from when he decided it would be fun to scare her.  I still have a half moon stuck to my forehead cuz he said he wanted it there.  There’s lego all over the table and he’s found his way upstairs to watch a few clips of Pocoyo on YouTube.

He’s got a lot to say these days.  Like yesterday he said “Mommy, if you poop….you poop!” very matter-of-fact.  I’m getting what I was so sad about missing with Silas.  All the Kids Say the Darndest Things moments.  Although Silas makes me laugh sometimes too.  Especially when he takes a look at a cracker he’s eating and says “Mommy!!! It’s the shape of Nebraska!!!”.  Oh dear Silas.  Such a different world autism is.

Isaac is coming up to being 4 years old.  He still gets mistaken for a 2 year old now and then.  He’s my little teenie weenie boy and I love it.  I bought him a shirt for my sister’s wedding yesterday and I had to buy him a 3T…and it’s still rather roomie on him.  They have a chart of all the kid’s heights in the class and Isaac comes in a good inch shorter than everyone else.

We were kinda hoping he’d get the height from my family and Brent’s amazing sports skills….I can’t see the height happening.  But it’s super duper cute for now.  He looks nothing like a 4 year old.  Maybe I got confused and skipped a year?  Nope.  He’s near 4.

He sure is a sweet little guy.  I think my massive amounts of affection that I dote upon my children is rubbing off on him.  He tells me he loves me ALL the time and I get kisses whenever I want them…for the most part.  The other day in the car, after hearing me say “I love you”, he said “I love you too sweetie huns”.  He’s coming up with pet names!  They get called about 20 different pet names within a day.

What can I say?  I’m a lovey kinda gal!

Neither of my kids have been the full of energy type.  Hardly any bouncing off the walls here.  I fear, though, that Isaac is getting more energy every single day.  More energy and more need for attention.  He demands attention and will pester me relentlessly until I give it to him.  I love that he wants to be with me.  Unfortunately I find playing cars incredibly boring.  Fortunately he’s still up for tea parties and dr visits with his dolly.  That I can do.

As much as I don’t write about him, I’m incredibly involved with him.  We have a LOT of alone time together and he gets to go out and have LOTS of hot chocolate with me.  The ladies at the nearby starbucks know that I want my grande dark roast in a venti cup and that his half-sweet-no-whip hot chocolate isn’t acceptable without a happy face written in chocolate on top.  They’ve gotten really good at that happy face.

He gets to eat things that would never be allowed in our peanut free house.  Not peanuts of course but may contains galore.  Cake pops from Starbucks are one of his favourites.  He’s just the kinda kid you want to buy a big doughnut and watch him eat it because it’s so cute.  I think my father thought that of me when he bought me things like that.

I’m also very on top of things when his brother shows aggression towards him.  Sometimes it’s sickens me how awful it looks.  I feel guilty that he cannot always be protected even in our own home.  But, I tell Isaac everything he needs to know to keep up that self esteem of his.  It’s NOT ok for anyone to hit you, you are a special boy and you don’t deserve that.  He usually responds, through tears, “yes I am very very special”.  I have him confront Silas on it and tell him that it was not ok to do that.  No son of mine is going to be a victim and no son of mine is going to have issues from this bit of darkness in our home.  Therapy will be mandatory.

The good side of all that is that he’s amazingly in touch with his feelings.  His self regulation skills are phenominal.  Sometimes so amazing that it scares me that he’s pushing bad feelings aside TOO much.  He will be upset, take a deep breath and move on.  It’s amazing to see.

I could go on and on about this darling little stinker butt but I fear I’ve already gone on enough.  But now you know there’s actually another little person in my house who gets loved and adored.  I wish I wrote about him more.  Mommy guilt is a horrible thing.

I love you Ikey Bikey Boo!

Bad Doggy!

I’m kinda mad at my dog Cleo right now.

We always have to put up a baby gate at the bottom of our stairs so she doesn’t get in to the garbages up there.

Today I forgot.

I came home and noticed I had forgotten and I bolted up the stairs to see the damage.  Computer room was ok, hall was ok, my room was ok…kid’s room….that’s where I got mad at Cleo.

Not because she ate a few diapers, it was my fault for leaving the gate down.  Not because when I went in to the bathroom I found more dirty diapers and other hideous bits of things I won’t speak about spread across the linoleum floor.  I didn’t even let my boys look in there for fear that it would alter them somehow.  Like baby Dexter in the shipping container.

I’m mat at Cleo because after she had her hay day with various body fluid catching recepticals, she took a big, fat dump in the middle of it all.

THAT was NOT my fault.

BAD doggy!!!!!!!!!!!!

Eustacia Cutler and I

I guess I’m not saving the best for last here, I’m just showing it first.  Not everyone gets to ever meet their hero ever in their lifetime.  Above is me with my 84 year old hero with her arms around me and Courtenay.

I.Am.Blessed

Eustacia Cutler is the mother of the famous Temple Grandin.  If you don’t know who she is then you need to google her…and watch this video.

I read Eustacia’s book in sept-ish 2009.  I believe it was one of the first autism books I could read.  It was hard for me to read about it because it would put me in the dumps in a big, bad way.  I picked up her book ( Thorn in my Pocket) and read it at Chapters while Ikey played with the train set there.  We were there every Wednesday and Thursday while Silas was in preschool.

Eustacia became my autism mommy hero.  Mother’s in that day were blamed for their child’s autism, they were told they never connected with the child and therefore the child is now mentally disturbed.  They were called refrigerator mothers.  Mothers who were ” hysterical” and in Eustacia’s own words “that means, in Freudian terms, that we…want a penis!”.

Eustacia ignored the “experts” and did not put her child in an institution.  She took the advise of some experts who didn’t think she was a crazy person and Temple is now world famous for her work with cattle and for her autism advocacy.  She is living on her own and everything!

Seeing Eustacia speak was amazing.  She gave us her story, incredibly well-spoken, and then went downstairs to sign her book.

I’m timid about getting ppl to sign things or having my photo taken with them.  Makes me feel funny, like I’m idolizing them or something.  I just couldn’t lose an opportunity to do with with her though, so I went to her table and waited for people to finish talking to her.

I then crouched down beside her and told her what her book meant to me.  With her arms around me I expressed how amazing it was that she was so forward thinking.  I told her she saw Temple for the human being that she was and not a problem to be fixed.

Then the most surprising thing happened…

Eustacia’s eyes lit up and she said “well I’ve never though of it like that before.”

What? I’ve taught HER something?  The woman who taught me so much has learned something, about herself no less, from me?

I felt pretty cool.

The night before I had tripped over my tongue talking to Elaine Hall, the lady who started The Miracle Project and directed Autism: The Musical.  I felt like a douche.

This made me feel much better.  So good, in fact, that I am still glowing and I might continue to glow for a long, long time.  Who gets to teach their hero something?  Or even gets to show them something in a new way?

Anywyay, beyond that, I was just so happy to see her, to have her arm around me and share a quiet moment with her.  Two autism mommies (and an autism therapist) loving autism for the beauty that it is.

Autism is Beautiful!

 

I’m still processing everything from the weekend.  I’m not sure what post to do first, what experiences to highlight.  I’m still buzzing from the amazingness of what I experienced at the conference.  I’m so blessed.

I’ve fallen even more in love with all that is autism.  I hate having to leave my kids for work.  I want to be part of things.  I want to implement everything I have learned.  I’m feeling very comfortable in my autism bubble and I don’t want to leave.

There’s so much to talk about but I don’t have the time today.  I have to work tonight.  Boo.

I hope you enjoyed the video and I hope it helped you see the human and the beauty and not the problem.

Day 1: Autism Vancouver Biennial Congress

What a day.

It was a bit funny, running around trying to find change to pay for parking at the Skytrain station with Courtenay.  Then finding parking that was more than 12 hours.  Then finding a Starbucks….that was actually most important.

Once we were finally there we got to listen to Karen Simmons speak.  She is the CEO of Autism Today.  She told us some lovely stories from her book and introduced the next speaker…after making us cry.

Shannon Kenitz was up next, she’s an expert and advocate for Hyperbaric Oxygen Therapy.  I was surprised to find out about the double blind test studies that had been done on it and the outcomes.  It looks like HBOT is good for ANYONE.  I knew this was something I wanted to try on Silas but now I have data telling me that renting a portable unit for a month is just as beneficial as using a steel one AND it’s cheaper than going to the one I was going to go to.  I’m thinking, maybe, of raising money to buy one for my community to use.

Shannon was an amazing speaker and she had us all bawling our eyes out as she told us the story of her 3 year old daughter who was two days away from having the plug pulled on her life support.  She took her out of the hospital and brought her to an HBOT place and she is now 12!!  Amazing stories.

Next up was Dr. Doreen Granpessheh.  We learned about ABA methodology and her new program she’s got going where the family can do their own ABA program.  Check it out at skillsforautism.com.  She had a wealth of information, she’s been doing this for over 20 years even though she looks about 35 or younger…she’s gorgeous and very well spoken.

Next was perhaps one of my favourite speakers of the day.  I think because he lives with autism.  He’s a university profession with a doctorate of education.  He teaches about special needs.  Dr. Stephen Shore…he’s hilarious.  I love how he explained his first encounter with a girl who wanted to be in a relationship with him and how he didn’t understand it but then we studied it like crazy.  He’s now been married for 20 years.  He’s written a myriad of books including Understanding Autism for Dummies.  You always know they’re great when they’ve written a Dummy book.  Yup.  He’s talking again tomorrow morning about success with autism.  I’m stoked.

 

I guess what I’ve taken away from today is a refreshed excitement towards helping Silas continue to move forward.  It’s easy to get inspired at a place like that, surrounded by great people.  I did learn a few things, I’m forced to be a bit of an expert in this field so I already knew a good deal of stuff.

These speakers are all very holistic in their approach to autism and that is also my belief.  It’s good to be validated.  You need to not only do the behavior intervention but you ALSO need to make sure their body is working properly and you also need to take care of the sensory side of things.  A lot of what I’m doing has been validated…which means a lot to me.

So I’m excited to learn more tomorrow and to continue to be strong and press on!

Vancouver Autism Biennial Congress!

I get to go to this tomorrow!!!  I’m BEYOND stoked about it.

This is a big conference for anyone who’s lives have been effected by autism.  Luckily mine has!  Plus I get to go with my dear dear dear dear dear friend Courtenay.  She’s taken on a job as a behavior interventionist.  The kids who have her are SO SO lucky.  She’s going to be an amazing BI.

What I am looking forward to the most is when Temple Grandin’s momma, Eustacia Cutler, speaks.  I read her book a long time ago and cried through most of it.  She’s a hero of mine because she was SO forward thinking for her time.  When everyone was telling her to put Temple in an institution, she knew better.  She got Temple all the right kind of help out of her own instinct and look where Temple is now!!!  We also get to party with her on Friday night during the Paint the Town Red Gala.  Way too exciting!

I’m going to be attending all of the behavior talks.  There’s also biomedical stuff but a lot of it just doesn’t apply to us.  Silas isn’t sick, no leaky gut, no eczema, nothing sickly about him that could cause autism.  Yes we do some biomedical but there’s nothing they’re talking about that I can’t google.  I want behavior stuff.

So, over the next three days, I am going to blog at the end of each day.  I’ll let you know the highlights and what cool new things I have learned.

******** Be right back….I can’t handle not having a coffee to sip while I blog and when I dropped Silas off at school Cleo attempted to EAT my coffee.  She looks very guilty right now.  Off to Starbucks**********

Ok, hot, creamy dark roast is in hand…I can focus again.

The other day I was driving and thinking about what it’s going to be like at the Conference.  Surrounded by other parents going through the same thing as me.  A whole BUILDING full of people who are on the same page…autism.  I got teary.

So, check back every night to see full updates of what I’ve learned and what has happened.

 

My Not So Normal Life

As I was driving home from the store today, with two kids in tow, I was thinking about how much my “normal” shopping trip would be such a nightmare for other parents.

Ya ya ya all kids whine and melt down at the grocery store.  We all deal with the naughty-ness but I think it’s scary when it becomes so normal for you that you don’t even think twice about it.  I no longer think of who’s watching and judging and I no longer even hardly bat an eye.  Silas hurt Isaac a few times in the store and I hardly even thought about it as anything abnormal.  Of course I dealt with it.  I made Silas help Isaac up off the floor after he pushed him down.  It didn’t stress me out…it was just normal every day dealings.

Yes my stomach does turn sometimes.  The metal bus being driven by a certain someone in to a certain someone’s face causing copious amounts of blood that got on 4 different people…that turned my stomach quite a lot.  Also tonight when I heard my husband yell out in pain and Silas scream when he realized how much he hurt his daddy after he went all vampire on his neck.

It sucks because Silas is a sweetheart.  He doesn’t WANT to be this way.  He hates it when he feels like we’re mad at him and he hates to see us in pain.  If I pretend to be sad to get a kiss from him (something I do to test his sympathy) he feels sad for me and always kisses me.  He’s a good boy and he’s got a kind heart.

He just has ZERO impulse control.

How do we deal with this?  Welp, we’ve tried almost everything aside from duct tape, straight jackets (been tempted), beatings and tranquilizer guns.  The best reaction we’ve come up with?  Absolutely nothing.  Don’t move, don’t flinch, don’t blink, don’t change your energy, don’t change the tone of your voice, don’t cry, don’t breathe different, don’t think bad thoughts….nothing.  Talk as if you were asking him to pass the peas.

Case and point.  A dear dear friend of mine used a bit of explicit language on facebook chat the other day.  Fine with me.  Silas happened to read it out loud.  Most parents would say something, punish the child, tell them it’s a bad word…etc etc etc.  The right thing to do, right?

Not. For. Us.

I SHOULD have said nothing.  Then it would have just been any other word for him.  I told him not to say it, that it was an “adult” word (I don’t think they’re bad words…they’re very useful sometimes).  Well….now when he’s melting down…especially in public…he wants to be bad and now everyone within screaming distance hears: “F….F……F…..F…..F……F…..F…..F”.

The other day he saw “dammit” and read it out loud…I said nothing….never heard the word again.

Yes I’m a horrible parent that my child has come to read these awful words but keep yer judgment to yerself.

My world is a strange strange world.  Where no punishment works better than punishment.  Where no reaction is the BEST reaction (and the darn hardest reaction ever). Where it’s completely normal for me to have my son perform public beatings upon his family members and scream profanities at the top of his lungs.

No, it doesn’t feel good….but it definitely feels like the norm.  How the heck has my life come to this.

Good thing the rest of Silas’ autism is cooler than rock-and-roll.

 

The boys ready for the playoffs in their new Canucks Jerseys.

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Case of the Grumpies

I’m having a grumpy day today.

I dunno what it is.  I was grumpy at work last night too.  I’m not usually grumpy.

It doesn’t help that Isaac is Mr Whiny McWhinerson.  I don’t know what starting this for him but for the last two weeks it’s just been whine whine whine whine whine about EVVVEERRRYYYTTTHIIINNNNNGGGGG.

My saint-like patience is wearing thin.

Silas isn’t helping.  The violence continues.  Yesterday he drove a big, metal bus right in to Isaac’s face causing quite the bloody mess.  He felt super bad about it because he didn’t argue when I sent him upstairs.  When I brought Isaac to confront him and express his feelings, Silas was sitting with his hands over his ears.  But he listened and said sorry and gave Isaac a hug even though I could tell he didn’t want to.

We have a meeting with the school board to discuss his violence.  I hope we can get freakin over this!!  I have him in what I think is the best school in my area and I REALLY don’t want him being kicked out or something like that.  I’m going to be cringing picking him up from school because the boy that he often gets in scuffs with is in a mood today.  I forsee bad things happening with that boy today.

Thankfully I am warm under a blanket with a doggy snoozing happily beside me.  Ikey is quiet, for now, and laying on the floor watching Play With Me Sesame.  Silas is at school for another hour and a half….perhaps I can find a way to chipper myself up.  I don’t want to be grumpy for work tonight.

Here’s to getting rid of the grump….wish me luck.

Easter Tradition Meets Hilarity

Nearing easter, I was somehow reminded of these two videos.  The one I made, I shared a long time ago and then I happened upon a video my sister uploaded of her family but she forgot to ever tell me about it.  They’re both rather funny to watch.  And yes, I eat a LOT of our Easter breakfast, it’s super yummy.

Then this is the one my sister and her family made.  So funny.