Radio Silent=No sleep!

To dream...perchance to sleep!  I've been absent from my updating duties because we've been a hot mess lately!  Nasty colds have overtaken our household including coughs, croup for Ty and suspicious ear pain for James along with a lot of very short nights.  In short - by the time I get to the computer at the end of the day all I want to do is shut it off.  Hopefully we have turned a corner and are ready to be done with our summer colds soon!


Despite all that we have been having an outrageously fantastic time with Hailey and Bri who came for a visit and a california-style vacation.  I think Jamie has learned more from them in the last few days then in weeks of therapy; they have been so kind and loving and careful with him and he is so eager to please them - what an amazing thing it has been to watch.


Hopefully I'll have something more fun to report on and more energy with which to report it soon!


sweet dreams :)

Zany

James with his cat-brother and dog-sister - they make a good team don't they

A little update on Zany - some of you know that Zany has a cat disease called FIP - terminal with no known treatment.  The timeline they gave us was somewhere between 1 month and 6 months.  He has lost 1lb 2 ounces in the last 2 weeks (which at 8lbs now has him down to skin, bones and big heart).  The vet says that the decline is not painful and we see that he is amazingly spry - very loving still and appears quite happy so we are feeling extremely lucky and grateful for that.

After 11 years of him sleeping every night on my left shoulder I'm not quite sure what I'll do without him.  But for now he is still there every night, even waiting patiently if I get up to attend to Ty in the wee hours, he always has a purr to welcome me back to bed.  What would life be without such friends as these?  Thinking of losing Zany makes me also think of the other wonderful animals that have graced my life...Cloud, Chaos, Hessie, Tinish, Ishi, Annie, Puck, Trumpkin, Luke and Leia - what a gift to have shared my life with these priceless friends.  I don't think there has ever been a person luckier then me.

You see James

"Daddy, can I have that?"

Boys and cars!  Gotta love it that he asked!


Someone commented recently that learning about all of this with Jamie was very sad.  Sad because it could mean a hurdle he may struggle with his entire life.  This was a person who knows Jamie intimately and who rarely views him with sadness but instead reacts to anything he does with love, caring and understanding and who also knows not to take any of his b.s.!  When LE and I were talking about this she stated very succinctly that putting it in writing felt hard because it highlights the diagnosis and changes the way we view things.

I start to hyperventilate if I go to that place...a diagnosis, a disease, a neurological problem in his brain....it can make me cry at the drop of a pin until I remember that there is no power in that if I just 'see James'.  LE pointed out that if you put the autism on the back burner and just see James that we can then remember that he is still our wonderful little boy and very much a fantastic individual who just happens to be working harder on things that may come easier to others.

Tonight Papi made hamburgers - a treat that Jamie had enjoyed a lot at yesterdays 4th of July barbeque!        When the tray of burgers came in James was thrilled, dancing around singing about how delicious they were...just one problem: he didn't want us to move or touch them!  Instead he decided that they were to be admired - instructing Papi to "eat your salad" so that the plate of burgers could be properly revered.  The worst part of it was that we were hungry but it was so darn cute none of us could stop him without laughing!  Fortunately the lure of Handy Manny was sufficiently overpowering and the burgers were enjoyed in taste as well as in sighting.  The moral: Jamie enjoyed our burgers for all the joy they can bring and we will do the same with him.

Future cupcake-eating-contest grand champion

Now THIS is how to eat a cupcake!

Now that we have gone gluten free and casein free cupcakes are a little harder to come by.  There is a great little gluten free bakery in Encinitas however we learned the hard way yesterday that they don't always have dairy free items as well!  Seriously?????  After having three different kinds of GFCF cupcakes there last week, now they have NONE? I had promised one to Jamie and I thought he was gonna go completely postal on me when denied....it's a good thing I don't endorse violence in front of my kids or I would have rearranged that baker womans face.

After a tiny freakout we made it back to the car where I discovered - low and behold - a jelly bean is pretty much almost as good as a cupcake.....who knew?  Happy candy eating!

No Tears! :)

The past week found our sweet Jamie in tears for the first 30-45 minutes of school - a state that left all of us around him feeling sad and helpless.  So many people in his life are trying so very hard to help him feel safe, confident and secure and yet we continually find that there is no easy answer to his anxiety.  Not long ago a speech therapist asked me what kinds of anxiety I thought he was experiencing and I answered "sensory, situational, separation and irrational" and she responded that I was wrong - there is no irrational anxiety.  It stuck in my mind because I was a bit defensive that she said I was wrong!  What I had meant was that it felt irrational for Jamie to be anxious when our loving dog Karma barks since he adores her otherwise or when I go upstairs to change clothes, even when he can see me and I do this everyday.  However now I can see what she meant - that something that feels irrational to me is very genuinely scary or upsetting to him even though I don't understand it.

I think that kids this age must generally find the world to be a profoundly confusing place regardless of their neurological function! Words with multiple meanings, literal interpretations that go unexplained and no control over anything in their world must make for a constant feeling of intellectual vertigo.  So they must find ways to cope, strategies to feel grounded and a basic sense of faith.  I am hoping with all my heart that we can teach this to Jamie in a way that sticks.  The good news is that today the teacher reported that there were NO TEARS today, and included a smiley.  This is his 7th day with summer school and I have fingers crossed that he is moving into a happy place there.  Regardless of the coming days, I will take every no tears/smiley face day with joy.

I am also looking for answers still...today I found a homeopathic therapy called CEASE therapy.  I have serious reservations about it as the practitioners involved seem to harbor some conspiracy theory ideas about vaccine by-products and autism which I find difficult to buy into based on the sheer mass of vaccine data that has been reviewed by the medical community in recent years.  I would assume that this treatment couldn't hurt Jamie but it may hurt the pocket book as the initial consultation alone is $400.  I seem to be grasping for a reason to believe in it though, as there are some tempting claims about "curing" autism and soothing the injured areas of the brain.  I know in my heart that I am vulnerable to these types of claims and that I am desperate for something miraculous to occur - something just to take away his fears, that's all I need.  I'm not sure how to proceed as I don't want to be taken advantage of by charlatans and I also don't want to miss something that could potentially help my child.  Any advice would be well received.

On another note, Happy Independence Day tomorrow!  Independence.  A nice thing to ruminate on.... my best wishes for us all to maintain happiness and independence :)....with no tears :)

"Miss Stephanie's NOT going to vacuum!"

Happy 9 month birthday to our sweet Ty baby! This months checkup showed him in the 97th percentile for weight at a strapping 25.4 lbs and 52nd percentile for height at almost 29 inches.  This may be why Andrew frequently refers to him as "Morty- the car salesman from Chicago".  In gum breaking news for Ty he also showed his first teeth this week - two front, bottom razors - nearly ready to chomp into his first steak now!  No crawling yet but some very impressive backwards scooting and teradactal noises to go along.


Jamie started summer school on Monday and for a kid who craves routine, predictability and low-stimulus environments, he is doing amazingly well.  He has a little stress about it but still happily runs to haul his backpack into the van each morning and has even told us about a new friend at school...we hope someday to meet the mysterious Malia he is talking about :) but none of us dare show our faces at school yet.  With perfect summer weather, the last two evenings had us in the pool before bedtime.  The warm water, soft breeze and calm company were the perfect combination to get Jamie and Daddy swimming away "in the big pool" - a great stride forward in comfortability and something he is really proud of himself for.  It is so incredible to watch them together.


My title today "Miss Stephanie's NOT going to vacuum!" is a direct (and much repeated) quote from Jamie when told that a nice woman from Regional Center was coming to play recently.  It was poignant to me as a glimpse into his world...his worries about who and what are going to happen next and his need to feel some sense of control over it.  


Hope things are well in your world and remember...when in doubt, don't vacuum.