"Change, when it comes, cracks everything open."
Dorothy Allen

Tuesday, October 19, 2010

Life, as it was meant to be

Having a rough couple of days.  No reason in particular, just one of those times.  You know the ones.  They seem to come and go through my life, just a period of a couple of days, or even a couple of weeks where life just seems to get....I don't know...harder, I guess.  Getting up in the morning, getting to and through work, chores and everything else just seems to drain the life and energy out of me. 

When these times come, as they inevitably do, I try to take stock of my life.  But as Minnie Driver says in Grosse Point Blank- "Leave your livestock alone."  But I can't.  I am a thinker.  I spend too much time in my own head.

And while I take stock, I inevitably turn to Sebastian.  Always.  Probably always will.

As pretty much anyone who might read this knows, Sebastian is autistic.  Sorry, my apologies- Sebastian has autism.  Apparently, that is the proper, "People First" phrasing.  To say it otherwise is to imply that his autism defines him.  Honestly, I think the people that really care about that, don't have autistic kids kids with autism so they have enough time to worry about stupid shit like that.   But I digress. :)

I don't know if everyone realizes what life with Sebastian is really like.  It is hard for me to describe- not that it is difficult or emotional for me (althought it can be)- it is just that we really don't know any different.  With Sawyer around now, I am starting to see the differences outlined more clearly.  But it was never something that occured to me, or that I really understood.  I will try and help you understand.

Days start early.  We are resetting his sleep cycle, rather successfully, I might add.  Part of his condition is problems with sleep.  For some kids, they can't fall asleep.  For others, they can't stay asleep.  Sebastian's issue is early waking.   When he started back to school he was getting up regularily at about 430 or 5am, and staying awake all day.  We use Melatonin to help him reset.  He's been on it about 6 weeks, and seems to be doing well now.  Bed time at 8pm, wake up around 7 or 730.  Totally doable.  But, like everything else with him, we have to monitor it, because once we take him off the melatonin, he will start to slip, and we could end up right back where we started.

We are choosing to deal with Sebastian's issues through naturopathic medicines, rather than traditional medicine.  This is about 85% our choice, and 15% because none of the doctors we have ever seen has ever offered us any type of recourse or medication.  I have very little respect for the medical establishment.  I do love my naturopath, however.  I would reccommend her to anyone.

Sebastian takes homeopathic supplements, omega 3 fish oil, calcium/magnesium supplements, B-12 supplemnents, multivitamins along with the melatonin.  We also have him on a homeopathic cold preventative regimine which seems to be working well.  As well, Sebastian is gluten free, casien free and beef free.  We do organic foods as much as possible, and try to limit his intact of artificial flavours and colours, like red dye, as much as possible. 

What does this mean in real terms?  Cooking for him is a bitch.  Try eating out with him.  We try and find restaurants that will work with us, and we have our favourites- Betty's will do poached fish, The Flying Saucer will leave the sauce off their grilled chicken.  We pay $5.50 for a loaf of bread for him, and $5.00 for rice milk.  Our grocery bill averages $350 for 2 weeks.  Yeah, for reals.

Sebastian still has communication issues.  He can be difficult to understand for strangers, and even for us sometimes.  He will say words out of order, and tends to memorize phrases.  He says things like "I can't like vegetables" instead of "I don't like vegetables".  He has trouble with the past and future tense, and really can't process abstract thoughts.

He has severe OCD tendencies.  He would be 100% content to watch the same 5 second clip of a movie for an hour.  Every DVD player we have ever had, he has mastered in minutes, so that he can rewind and replay his favorite parts of movies. He loves his "papers"- pictures that he has printed, shots from his favorite movies, or of his favorite TV shows.  He carries his papers, and will look at them and arrange them for hours and hours.
The other day, he had his papers laid out on my bed. The dog jumped up to lay down, and messed up his papers.  That triggered a meltdown that lasted 30 minutes.  It culminated in him actually balling his small fist up, and pounding it into his thigh as he cried, something he has never, ever done before.  I tried to help him with logic, with firmness, and finally, I just held him in my lap and rocked him, like I did when he was small. I let him cry, and I cried too, right along with my sad, strange son.

Nothing comes easy for this kid.  Geoff and I still help him dress every day.  He can do most, but still needs help.  We help with bathing and other self needs too.  We help him eat- he can't cut his food, and sometimes has trouble with his fork.  He just learned to pour his own milk, but can't stick the straw in his juice box.

The list goes on, and on, and on....

So, this is a snippet of what life with Sebastian is like.  I don't have the energy, or the time to touch on the appointments, the doctors, the therapy, the school visits, the special programs....

Of course, there are the happy times.  Oh so many. :)

The boy feels love, great and deep and wide.  He will hug and kiss me on the spur of the moment because he feels like it.  He doesn't know how to lie, or cheat, or decieve.  He is unrestrained and will dance and jump and hop when his happy feelings get too big.  He will laugh uncontrollably at little things, like bubbles and funny noises and silly knock-knock jokes.

Sebastian is the reason I wake up in the morning and the reason I can't wait to come home at night.  I have snapshots in my head of our happiest times:
- the morning he was born
- driving to St. Jacobs in the back of my parent's car when he was about a year old, and making each other laugh with funny faces
- holding hands and walking through a corn field
- Sebastian using his first sign (more) and speaking to me for the first time when he was 2 and a half.
- Sebastian telling me he loved me, in words, for the first time.   It was right after his surgery, and he was 4 years old.
- Sebastian yelling "It's mommy!" every night, when I come home from work.
- 2 years ago at Christmas, when he finally started figuring out what Santa was, and what he does
- having sleepovers every year that Geoff went to Chicago- eating pizza in bed, and watching Harry Potter movies.
- his smile
- his eyes
- his laugh
- the way he says....oh, just about anything.

So, livestock.  Life- the way it was meant to be- it just the way I am living it now.  Wouldn't trade it for anything.

Rosie N. Grey
The N stands for natural, normal, nirvana.


  1. Sigh....I'm trying to stop the water from going over the brims of my eyes. I'm at work.

    He's a doll if ever there was a human doll. He is you and he is yours. He is and forever will be a good person.

    You are an amazing mother and you are entitled to 'off days'. He needs you and loves you with every fibre of his being and every capacity that he has.

    He is good and you are good.

    Love you both tons and tons.

  2. Thank, Hol. It's nice to hear once in a while. :)