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.