Thank you, and prayers needed

I want to thank everyone who is replying for their prayers.  I know my blog has become one.. mindless rant against this autism thing in the last few posts, but there are just.. no words to express how hard it is to have a child that you could play and communicate with and then to find that contact fading.  We are on the path of therapies but so far each meeting has been about paperwork and questions and 'next time we will start'.  I want to see some results.  I want to see that lovely awareness dawn in his eyes again.  I want him to communicate with me.  I want to know that in 10 years from now he will be entering highschool, with some challenges but aware and happy, and ABLE.
And I want to be able to sit down and play blocks with him fir 10-15 minutes.  On top of everything Michael is teething and having a cold.  We (hope) that the light fever is what is making him worse, unable to focus and just... running around like a hyperactive drunk.   But we do not know.
I want to skip the next five years till we are in a less "I do not know" period.  I have been looking forward with such longing to this age where I would finally be able to communicate with my boy and now instead of things getting easier, it is just getting harder and harder.  I had some hopes that a few weeks in things would.. settle.  My emotions, his behaviour.  That it would get better.  I am a wreck, emotionally and I need it to stop because autistic or not, he needs me.  My oldest son needs me, to be a bridge between both of them.  But I hate the endless repeat of words without sense, of scripts from books and television.  I want to hear him talk.  I want to.. interact with him.   Please pray that something of the therapies will start and start working soon.  And that he will be getting better, leading a self sufficient life eventually and be happy. And that I can be happy again.  It has been so long now since I have seen some happiness.

At least the transition to school goes well.. right?

Michael went to school twice already.  In theory those mornings would be for me to relax and recover.  That was the plan even before we faced the autism.  Just two weeks, with three mornings each, for me.  Now it had become even more important to get that time.  To not have someone around that you need to constantly engage, constantly be watchful for, with no communication unless for his wants.
I would get a small amount of time to load up my batteries and do all that again as soon as he was home.  Day one at school, he did not react at all to a stranger leading him out of the car and into the classroom.  I hoped and prayed that this was not total apathy, but just the fact that he had seen Joseph being lead in the same way a hundred times.

Day two.. some small protesting that was finished already by the time he was past the car.  This reassured me.  A normal separation reaction, and then a day of fun.  When I picked him up, he didn't want to leave. That hurt, but was reassuring as well.

Day three: he starts screaming the moment he sees the teacher.  She wonders if he is warm.  I say he MIGHT be teething to stave off the inevitable conclusions of illness or whatever. Michael does have trouble teething. What does Michael NOT have trouble with?   I am so tired of Michael and trouble.  I want Michael and effortless.  Effortless SOMETHING.

35 minutes later, just as I am about to lay down for a nap, because for some unfathomable reason Joseph had to get out of bed four times last night and I have my very first class to teach this night...  the bell rings.  They really think he is teething so badly. He is crying.  They can't distract him.  Can I come and get him.  I step in the car and drive, trying not to cry. He is crying.  The moment he is in the car seat it starts settling.  The moment I drive away, he stops. I go to target and pick up some cola.  I will need caffeine to get through this day, and to stop myself from screaming at the students how God is playing some cruel game with my life that I can not figure out.

I drive home, and have a hysterical fit the moment I drive into the garage.  I want my life back.  I wanted, needed those hours.  I can not have somethign else go wrong. This transition to school  must work. Please God, have mercy.  End my misery.
I am home, typing away at the computer, in the background is the incessant chatter of a little boy, making no sense.  I need more.  I can not live like this.  It needs to get better.  Now.

Please pray for the repose of the soul of Edith Hauk

Yesterday, my husband's grandmother Edith Hauk died.  She had been suffering from severe Alzheimer for the last three years, which brought on extreme paranoia.  She suspected everyone was trying to kill her, and believed all those around her who loved her were impostors instead of her real children and grandchildren.  I only got to know her for a short time, but I remember how she welcomed me.  I remember the stories of how she was fretting if I could speak English and what kind of a foreigner I would be and how they would make me feel welcome.  How happy she was that I spoke English, and even delighted when I spoke German as well.  I am glad she got to see her two great grand children.

I hope God is welcoming her with open arms, lifting the confusion from her mind in His Kingdom and how she will find joy adoring Him forever in His perfect love.

Here is a picture of her with Joseph when he was barely a few months old.

Lunches

For years I have been looking forward to packing Joseph's lunch.  But preschool was only in the morning, and I was glad to have my big boy back with me in the afternoon, and make him some lunch at home.  Even though at some days lunch was 'popcorn'.  He never has been a big eater.
This year though, Joseph transferred to 'big boy school'.  He becomes five in late September, so he is still one year away from Kindergarten.  Though we may be talking about that a bit further into the school year. He is already reading, he does math, I can not imagine him having an extra year in kindergarten AFTER this year.   Oh well, back to lunches.
I have a love for bento style lunches, and a desire to pack Joseph a healthy lunch that still makes him feel happy when other children might have chicken nuggets...

So.. here are a few of the lunches I have made so far, in no particular order:

Small bento with left over meat balls and fried rice and a cucumber/ lettuce salad, with flowers cut from, and out of the cucumber, and a few flower food picks, hazelnut raspberry dressing in the small bottle.

Joseph requested some chips with his meal. I filled the small compartment up with kettle cooked rosemary/ feta chips, made 'cucumber/ turkey' sandwiches with diverse food picks.  There was a lettuce leaf salad with hazelnut/ raspberry vinaigrette and some corn, and some unsweetened apple sauce.

Cucumber bars on a bed of lettuce with asian dipping sauce.  Pretzel chips, Brussels sprouts with cheese, and organic, nitrate free hotdogs, with unsweetened apple sauce, per request.

Homemade spaghetti and sauce in the big thermos, an apple with a face in it, and the unsweetened apple sauce.  Joseph was on an apple sauce kick.

Ditched the apple sauce in favor of a homemade smoothie: coconut milk, frozen berries and orange juice.  A grilled cheese sandwich on flax seed/ whole wheat bread, with avocado.  Mini turkey rolls (both rolls together are only one half slice, with kitty and doggy foodpicks and left over broccoli.)

The home made alternative to lunchables: crackers, fresh cut, no starch or icky stuff added Turkey, swiss cheese, a cucumber and cauliflower salad, some blueberries and the unsweetened apple sauce.

I will readily admit that his boxed lunches are quite a step up from the lunches at home!  Not certain why I didn't manage to get it together for regular lunches like this.  And I am curious if I will manage on the bento path for the rest of the year!  The little details are appreciated though, especially the face in the apple was a big hit.

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.

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".

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.