And so this is Christmas.. and what have you done... another year over..

Another year over.  Almost.  I am not certain what to write, which is why I mostly have not written.  My last update was in April, in a sleep deprived fog.  We have nights now that we sleep.  Sometimes several nights in a row. T here are nights too when sleep remains not more than three or four hours. It's hard.  Michael has been making tremendous progress this year, often speaking in full sentences.  He's not even four, so that is good. At the same time.. you see children of two years old speaking at the same level as he does and you want to scream.  Why can't you do that?  Why won't you still not poop on the potty.  For goodness sake, let's just get this over with.
But it won't be over with anytime soon. Perhaps never.  The worst part I think is the fact that all those inspirations stories don't really inspire me.  That wonderful little movie about the boy with down syndrome who gets his acceptance letter for Clemson?  Yes.. it made me cry to see his joy.  Then it made me cry again because I do not want to get Michael into some sort of "Live" program. I want him to study analytical engineering and be hired by BMW to develop their new line solar engery operated sportscar.  Or something of that nature.  I want him to become a blacksmith who travels around to Ren Fair events and makes pewter cast jewelry that people snap up.  I want him to become USC's new history professor with an incredible memory for the details of the Korean Wars...  I want him to have friends, a marriage.. a normal life with extra ordinary details, even though we may need to fight harder for it.
I am not encouraged by people who say that 'these kids' are 2/3 of the emotional age of their peers, so they hope their daughter, who is now 14 will be able to get maybe an associates degree possibly and be living out of the house when she is 30.  I am not inspired by stories of the boy in Australia who wins math contests.. but is minimally verbal.
I want stories like: Andrew had a tough time.  It took him several years into Highschool to get around socially.  Academically things went fine after we manged to get his speech under control with several years of speech therapy but now.. he's 25, graduated college (or finished hair dressing school for all I care) and is now enjoying his first vacation off his busy job  Can you believe he went climbing all by himself? But that's Andrew, he always liked his piece and quiet.

And I want to know that Michael will be like that. That he will have challanges and that they will be overcome.  That he will fit in, like a different coloured puzzle piece that still makes the whole more complete. I want to stop changing diapers.  I want to stop the extra work. I want to stop feeling guilty if I want to zone out with the computer or some knitting because I should be engaging him.  I want someone to come down here and tell me it will all go well, that he will learn to read, study and that I can get off this insane mill of worries and work.

Maybe this blog should be called the three am chronicles.  I am figuring out that that is the only time I may have to write.  And, sitting on a chair in front of Michael's room..there is not much else I can do.  See..one of the more gruelling aspects, I have found, is that children with autism often (very often) have sleep problems. As usual there are many theories as to why, no real answers, and above all... no quick solutions.  During the day, you try to offer constant attention and interaction to your child, ABA therapy, lots of love, everything to the point of worrying if you are short changing your other child.  In the mean time, you also cook everything from scratch and avoid the microwave, because a natural, grain free, starch free, sugar free, soy and corn free and dye free diet is best for your child.  And then at night, you often end up awake for several hours because something, either external (a bird, a storm, a gust of the aircondition) or internal (who knows what)woke up your son, and getting back to sleep takes literally hours.  Hours that you have to sit perched on a chair in front of his room, because if not... he will slap open that door and start wandering around he house, waking everyone else up as well.

t three am, with a meeting at 8 am, for which I need to be alert and for one also looking well (photographs will be taken), it is hard to think of positive things right now.  But they are there.  Michael did  make his first peepee in the potty today, leading me to believe that this may just be my last year of changing his diapers.  He is speaking  more and more.  He loves to play with me, with his dad, with his brother... At just three, he knows all the letters of the alphabet and can recognize them.  And I love him.  I love him so much.
But at 3 am, I am not feeling like celebrating victories.  I want to go to sleep.  I want to look well and professional tomorrow.  I want to have my brain available, not lost in a fog of sleep deprivation.  I work twelve hours a week.  Most weeks, eight or more of these hours are worked from home, several even after both boys are off to bed.  The few times I do actually work with people, I do not want to be a zombie. 
At three years old, you should be past the sleep deprivation that you expect the first year or so with a new baby.  It seems somehow as if the baby phase is extended: difficulty communicating, no self control, difficulty sleeping...  I want to go to the next phase.  
Michael is so full of potential, so full of life, and love, and gifts.  I look forward to seeing him develop, and I pray for the strength to give him all he needs.  I also pray for sleep.  Particularly on nights like this, where -with tears in my eyes- I am seeing the minutes tick by and am reverse calculating how much sleep I can expect.  At the moment I am estimating three hours...

I am tired...

We are three months into our journey, and I am tired.  I don't want to fight to communicate with my child anymore.
Since last week, we have the official diagnosis of mild to moderate autism.  People who work with him say there is no reason why he would not lead a full life going to school, to university, have a job.. anything.  And a few weeks ago you would see me filled with enthusiasm as well. He was responding insanely well to the therapies and the diet. Each day saw progress.  Pictures even showed a difference: he was clear, alert, happy, and we were getting even to the point of conversation.  For an autistic child of less than three years old, that is great.
Then Michael got a cold that lingered.  We thought first that the temporary regression was a part of that.  Now... his snot seems to have cleared up, aside from seeming rather tired he seems fine.. but the 'fog' is back so to speak.  It is harder to get his attention. He started lining up his trains instead of playing with them, something he never did before.  And his language skills are fading again.
This up and down thing is driving me nuts.  I need some solid progress again.  We are thinking of taking him to the doctor to rule out an ear infection.
I need things to get better again. I am so tired of fighting.  Fighting for therapy, fighting for time with my oldest son, fighting to reach Michael.
A few weeks ago everything seemed to fall in place.  Now everything seems to be falling apart again.

In those first weeks I panicked.  I cried.  I despaired, I screamed.  There was very little I did not do in those first few months of grief.  I was overwhelmed.  I had not healed yet from all the catastrophe's that this year had thrown to us, and all of a sudden there was this.. earthquake.  Things seemed to happen so fast.  Michael seemed to be changing and withdrawing day by day, speaking less.  Avoiding eye contact.  I felt like I was loosing my little boy to something so cruel I did not have the words for it.  I barely dared to read about Autism because all I heard were things I did not want to hear.  "My eight year old son was doing so badly but now he has a vocabulary of twenty words."  I couldn't handle the thoughts.  The stories of 8 year olds that had to be talked to their bath.  Sure there were stories too how Bill Gates or even Steven Spielberg would be on the spectrum but so much more stories that scared me.  WHere had things gone wrong?  Why were they changing?  What could I do?

Bill was like a rock in those early weeks and months.  I do not know where he got the strength to deal with the news and with me falling apart, but he did.  We hustled, bustled, started a special diet, tried to squeeze him in as fast as possible to get help, because whatever we read said that early intervention was key.

And now we are a little over three months in, and things are starting to settle.  There are challenges, yes. And hard work and lots of patience needed.  Especially when it concerns sleeping.  But there are hilarious moments as his language and understanding is starting to develop quickly all of a sudden.  He interacts more and he shows it is rather hard to pull one over on him.   Still, I have trouble with it.  Communication and relations are my life.  The fact that both of those with Michael are such hard work feels strange.   I remember thinking so hard: "I do not want this.  I do not want this.  I have had enough to fight.  Please don't make me do this. I don't want this.  Take it away."
I still do not want this.  But the hysteria has faded and what remains is the work.  And the journey.  And the hope.  And above all the love.  

4 months

It started four months ago.  Or should I say, it started in January?  At least that is where our year of misery started.  This blog isn't intended to be about 2012.  In that case I would have to burn it ritually, I think, just in the hope that it would be gone and never, ever return.  Let's just say that when August came about, everything in the house had broken down, some things twice.  I had unexpectedly lost my father and my godfather, one 63, the other barely 50, both under tragic and painful circumstances and we knew it was only a matter of time before my husband's grandmother too would pass.  We had been in a car accident, and just about everybody had been ill.  August and especially September seemed to finally offer the promise that life would get back on track.  Michael would start preschool three mornings a week.  Joseph would go to 'big boy school', and I would finally have time to clean the house and emotionally deal with the mess this year had  been.  And then in August all of a sudden we noticed that something was not right.  Michael started to withdraw.  He spoke less and less.  He didn't look at us anymore.  We knew the verdict even before the doctor, reassuring us it was probably nothing but that she still wanted us to have him checked out, mentioned the word: autism.