Friday, August 31, 2012

A week further..

Joseph's transition into big boy school was very smooth.  He'd been waiting for weeks to be able to go.  He loves his school, loves his little uniform, and would prefer to wear his school tie every day, whether it is required or not.  The only problem I have run into are the white polo shirts. My machine just does not get whites clean.  I use Tide.  The stains are not that bad, but even after washing, those yellowed shadows of stains keep being visible.  Annoying.  Any tips to get those whites white?  I would use bleach, but.. I had a try a few weeks ago. Put the shirt in a bowl, added lots of bleach and a little water.  I think I left it too long and the bleach literally dissolved the 100 percent cotton fabric.  I was getting shreds out of the water..  Maybe I should just add some bleach to my load of laundry?

Michael's been tested and for the next six months we are eligible for early intervention therapy.  Next Tuesday, we will have another evaluation from the company who will do the therapy.  Prayers will be greatly appreciated on this front.  I.. go through the days, trying to adjust to a different expectation.  It's hard.  There are times when I just want to shake him and tell him to act normal.  to look at me.  To listen. And then there are moments of progress when I am so proud of him.  I guess the Lord is trying to break down my heart, though I have no idea yet for what.
And I am tired of being broken down.  I feel like I'm a rock that's been beaten down so many times I am like gravel.  Maybe the Lord needs gravel somewhere.  I do not know.  I am hoping that with therapy things will become better over time.

I was planning to upload a picture here as well, but somehow can't figure out anymore where to upload something from your computer instead of from the web.

Tuesday, August 21, 2012

Back to school

Tomorrow will be Joseph's first day of school.  We're having a little challenge there: Joseph is officially three weeks too young to start kindergarten.  Joseph also already taught himself to read.  Does subtraction and addition.  And has started on multiplication and division. Luckily his new school is very supportive.  He will start in Pre K, and then will after a few weeks do the Kindergarten readiness test and hopefully transition.  I am not worried.  He will be the youngest in his class, true, but not much more than by a month, or a few weeks.

My main worry is with Michael.  He will start in two weeks at preschool for three half days.  The same preschool that Joseph went to.  It's a small, wonderfully supportive Christian school.  But I am still going to send a two and a half year old who can not answer to the question: "What's your name?" to preschool.  I am scared.  But I will be honest, I NEED the break. I need someone else to take a few hours to activate him and distract him from the trains that have become an obsession and play games.  And talk to him.  That will leave me full of energy and inspiration I hope for the other days.  My brain is just about to glitch out from "Yay! That train is Emily.  Emily goes UNDER the bridge. Oooh.. here is the conductor. He says "hello" can you say hello?"  (No reply).  I am grateful he is verbal, but I am so longing for a bit of two way conversation.    Yesterday.. he was giggling hysterically at the 500 the time he watched Curious George trainmaster.  And when daddy said: "it's not THAT silly Michael."  He actually said "It's funny!" A  reply?  A comment?  At least he identified the situation.

I so do not want to think that way "at least he did this.. or that.."  But for now.. that is what it will take.  At least... it could be worse.  I can not help but look around me at everyone with healthy children and think "it could also be so much better".

Monday, August 20, 2012

After the earthquake II

We are now about three or four weeks into our struggle.  We are not further by any measure in getting a diagnosis, but next week we have at least an evaluation for early intervention therapy.  I will take it.  I put Michael on the specific carb diet, and it seems to help.  The trick is getting him (and the rest of the family) to eat.  Cutting out all grains, all potatoes, and all rice, and all other gluten free options, as well as milk, corn and soy leaves a mommy bereft of easy options.  We've been eating more meats than we have in ages.  Some days are harder.  Some days are slightly easier.  I am fighting against the feeling in my stomach, as if I need to hold my arms around my waist to keep myself breathing, to keep myself from falling apart.

My wonderful in laws came over from St. Louis and took the boys for three days, allowing me the time to finally do all those phonecalls without falling apart.  It helped.  I am a bit calmer.  One step away from the abyss.  Hearing about other people with children with autism scares me, so I stay away from autism groups or autism sites, and even from the friendly offers of people to connect them with their friends who have children with autism.  Not because I do not appreciate it, but I am just not.. there yet.  I do not need to hear about the hard time ahead.  I need to hear about the outcome.  About 18 years in the future when Michael will graduate from highschool and go to college, like the son of a friend of mine, with Aspergers, who was diagnoses very late, even though he exhibited the same signs as Michael.  16 years ago, we didn't know as much about what this was.  Michael will have early intervention therapy.  He is verbal. He is smart.  He shows emotion. His vocabulary keeps improving.
I focus on that. On helping him with that.

I focus on how I am going to deal with next school year.  I want him to keep away from grain and dairy at school.  An alternative lunch box for snack time. But what about treats when someone has a birthday?  I am looking at paleo recipes, because they often fit in with the specific carb diet.
I am telling myself I can do this.  That we will have extra challenges, but still a normal life.  Our whole life will not revolve around Michael's autism.  We will be a normal family, just with something extra to deal with.  After a while it will be routine. He will not be 'my child with autism' anymore. He will be Michael.
I will knit and clean and cook and embroider, and go to SCA meetings to enjoy my love for the middle ages, and in between there will be worries about my son.  And there will be perhaps meetings here and there with therapists, just like there will be karate practice and ballet practice and everything.   But we will manage to make this a normal life.  Just with an extra challenge.  Oh I am so tired of extra challenges.

Thursday, August 16, 2012

After the earthquake...

I've hesitated in writing this post. Hesitating in putting these words out there.  Should I throw them out within the internet, for all the see?  Perhaps those of you who used to read regularly wondered what has happened. To quote Queen Elizabeth II:"it turned out to be an Annus Horribilis"

 The year began in a very hard way when in January my uncle and Godfather took his own life in a very public way, leaving behind harsh words for the family.  We know those words came from a mind that was no longer his own but changed by the effects of alcohol abuse but they were hard to deal with none the less.  My grandmother's health failed, she fell, and had to be brought to the hospital, after which she was unable to go back home.
In the mean time, small but stressful compared to these larger matters, in our house everyone became ill with small complaints, and the house itself seemed to be conspiring against us with just about everything around us breaking.

May brought an unexpected hit, when my father died.  Our planned vacation in Belgium became a swift run to arrange the funeral. But not just the funeral it turned out. My father, an alcoholic, had managed to run himself financially in the ground, leaving me as his only daughter with debts to clear, and a squalid rented appartment to empty.   I will save you the descriptions of the stress, the bureaucracy and the dirtiness, as well as the pain of dealing with his grieving mother, and trying to hide the worst evidences of what he had become behaviour from her. It made it clinging to "honor thy father" and remembering the man he once was harder.
We dealt with everything we could in a month, but even now, regularly there are small things that need to be tended to or spoken about from a continent away. I fought hard not to let bitterness harden me.It brought back memories of a robbed childhood. But with God's help, I managed.

Once back home, the wreckage at home seemed to continue, with air conditioning upstairs and downstairs giving up, electricity failures, and trying to desperately catch back up with all the work that we were trying to do.  We had a small vacation in San Francisco, where I loaded up my energy batteries while my husband attended a conference.  It seemed we were climbing out of a valley of stress finally and the year was back on track.
Then there was a car accident.  Luckily we were not at fault, no one was hurt, the other person took responsibility and was insured. All in all, as car accidents went... it was okay.  Aside from the stress of not having our own car for a month, we were lucky in having a rental car in our insurance package and while it was an inconvenience after the the rest of the year, it didn't make a blip on the radar of this year.

We were looking forward to September, the rhythms of a new schoolyear.  Joseph starting in our Parish school.  My oldest boy, so smart that before he is five, he taught himself to read, and is eagerly learning mathematics, including the beginnings of division and multiplication.  And then Michael who was going to go to the same small Christian school that Joseph had attended for 3 years.  I could see a rhythm coming back, a cleaner house, a more relaxed mommy.  Lunchboxes.  Friends.  Hobbies.

And then came the earthquake that rocked our world.  After a few incidents it became all of a sudden abundantly clear that there was something wrong with my youngest son, Michael.  He changed almost before my eyes.  He would just.. go off by himself. Sought less contact with his brother.  Played differently.  And his language... was just not where it should be.  The most telling sign was that.. he did not react to his name.  At all.  The answer dawned upon us even before we hurried him off to the doctor.  Autism.
Michael is very smart, and the doctor saw reasons for concern and urged us to have him tested through the school district, but when pressed said.. if she had to put money on it.. she believed it was unlikely. In the weeks after the doctor visit though, and while we desperately tried to get through to SOME specialist, someone, who could evaluate and start helping our little boy... we saw the signs more and more clear.

The anxiety of a parent that knows something is wrong with their child and sees it slip more and more into the grip of the unknown is indescribable.  And now, 20 days or so after this all started with the sudden realization that Michael did not respond to our name, the agony, pain, anger and fear in my heart go above words still. I immediately implemented a strict diet.  First gluten free and casein free.  Afterwards going further and eliminating any starches, going on the specific carbohydrates diet, that is known to help some with autism.

I do not know if it will help Michael, but it's a healthy way of eating, it can not hurt, and it gives me something to do to try and help him while I call, and try and make appointments. We managed to get one over the phone intake conversation, which showed that Michael is severely behind in speech and social skills.  This will get him an evaluation which will lead to early intervention therapy.  But not to an official diagnosis. That is another path we need to walk, and we are still trying to even get a spot on a waiting list to see a developmental specialist.

I am scared.  And I am angry.  And in pain.  Before I even had children, I begged of God never to put this one challenge before me, never to let me have to deal with the agony and fear of a child that has a developmental, social or mental problem. Of course I wanted healthy children.  Everyone wants that. But if I had to be dealt a hand of a child that was not, let it please be a physical handicap.  I could see myself.. handling that.  There would be things I could predict. Things I could know.  A course I could predict.  The worry would be less.  Worry is now eating my every day.  Am I now 'the mom of the weird kid in the corner'?  What will he need from me to help him?  My love is not diminished by a grain, but my confidence is gone.  I know how to parent. I do not know how to parent a child with autism.

I hold myself up to hope.  Bill Gates and Steven Spielberg are on the Spectrum.  So is the 18 year old son of a friend of mine, who just last year graduated from highschool, is going to college and is planning to join the marines after that. But those people are not Michael.  Not my Michael.  Will he be able to learn? He seems smart.  Will he be able to have friends?  Will he learn how to show his love?  Will he have a more difficult life because of this?  Will our life be forever changed?  Is the fact that he is diagnosed this early helpful?  Or does it mean he is severely disabled and will he end up in an institution, sitting in front of a window and running the endless television or book scripts he repeats to me from his mouth?

 I have no answers.  Only questions.  And tears.  So many tears.  I try to be strong, because I know my husband worries, not just about Michael, but about me.  I try to force the matter out of my mind for a few hours a day, but like a bulldozer it runs through my brain. "autism" "autism" "autism".  It feels as if my life broke in two, before this problem surfaced, and after.  I do not dare to read too much, because the extremes scare me.  I read a story about a 19 year old who needs to be talked through his shower.  What will my life be in 17 years?  Will I have an adult child that is not self sufficient?  Will my life revolve around his care?  Or will he, with the necessary intervention, be able to lead a life in which all the love and talent that I see in him blooms open? &nbspI do not know.  I do not know how to walk this path.  But walk it I must.