King of the Castle

Doodle is the ruler of all things.

Jimmy is the Jester.

Daddy is the Jack.

Although you may assume I am the all mighty Queen, I am actually the King's servant; a job I take very seriously.

Unanswered Prayers

He can do it at the dinner table, put his hands together and pray.  It's actually his idea.  He pats the seats until we all get to the table--and then he'll put his hands together and look at us and smile.   I'm not sure what he's praying for exactly, maybe more Doritos and a never ending fountain of salsa. 

The bad news.

We've been having a lot more seizure activity lately.  Not the big scary grand mal kind or even the throw him to the ground head drops--but more staring/absence seizures and definitely more jerk/scare him out of a dead-sleep seizures.  Some are so powerful that he screams out and sits straight up, scared out of his mind. If he was anywhere near the edge of the bed, he'd fall off the bed; completely confused and scared. But, I'm next to him and these seizures wake me too.  I pat him on the back and tell him it's ok and then he cuddles back into me and falls back to sleep.

Night terrors?  Not likely.

I've been watching videos online of other kids and their types of seizures--and this is definitely one type of seizure.  Picture if you were sound asleep and that feeling you get like you're falling and your arms and entire body react suddenly and you're startled awake.  This happens with the Doodle at least 5 times a night, sometimes more. 

I stop and think what kind of true sleep, in the form of actual restful sleep is he getting.  He's always tired.  And the dark circles under his eyes are getting worse and worse.  I even bought a Dreamcatcher the other day and hung it on my bed.  The Native Americans believe that the legend that good dreams will pass through the center of the Dreamcatcher and the bad dreams will get caught in the outer part/web.  At this point, I'll try anything- superstitious or otherwise.

Food allergies? Metals? Toxins? Vitamin Deficiencies?  Probably those too.
Along with the restless sleep, I've been jerked out of my denial that things aremight not be ok and that the medicine might not be working like it used to...and I think it's time to got back to UCSF for another sleep study if we have to.  Oh, I am not looking forward to that one. And also to bite the bullet and find another DAN! Doctor to get the testing I wanted done last year when things went so very wrong with the last DAN! Doctor I chose.

Oye.

So tonight after his bath and just before bed we prayed. 

We both got down on our knees and we prayed to God that the Doodle will be ok.  I'm not asking and praying and begging for a cure, I just want him to be OK.  As for the Doodle, he was just happy that I was next to him doing what he likes to do:putting my hands together and smiling and telling him it's going to be ok..

Because I'm feeling especially grateful today

"You simply will not be the same person two months from now after consciously giving thanks each day for the abundance that exists in your life. And you will have set in motion an ancient spiritual law: the more you have and are grateful for, the more will be given you." ~ Sarah Ban Breathnach

Cuddles

The Doodle is coming around.

He's much nicer to his big brother.

He actually loves to play with him now.

And cuddle with him.

And he gets excited to see him.

And he likes it when he sits down next to him as long as he gives him some space.

He even puts his hand in his shirt, a true sign of Doodle Love.

My hope is that they will always have a good relationship.

And get closer and closer as time goes on.

I know the Doodle will probably depend more on his big brother, for obvious reasons.

But I also know that Jimmy can stand to learn a great deal from his little brother.

The Doodle has taught us all a lot and will continue to teach us, if we open our hearts and mind and let him.

Selling Out

There is a difference between removing something and retracting it...yet what I'm being asked to do just doesn't feel right.  It feels out of integrity so I'm going to have to really think about this because it's not really about the money for me.  It's about justice, responsibility, principle and ethical behavior.  So although there is a distinct difference in word meanings, the outcome will be ultimately the same.

re·move (r-mv)


v. re·moved, re·mov·ing, re·moves

v.tr.

1. To move from a place or position occupied: removed the cups from the table.

2. To transfer or convey from one place to another: removed the family to Texas.

3. To take off: removed my boots.

4. To take away; withdraw: removed the candidate's name from consideration.

5. To do away with; eliminate: remove a stain.

6. To dismiss from an office or position.

re·tract (r-trkt)


v. re·tract·ed, re·tract·ing, re·tracts

v.tr.

1. To take back; disavow: refused to retract the statement.

2. To draw back or in: a plane retracting its landing gear. See Synonyms at recede1.

3. Linguistics

a. To utter (a sound) with the tongue drawn back.

b. To draw back (the tongue).

v.intr.

1. To take something back or disavow it.

2. To draw back.

Daddy Time

Jim's been working out of town--too far away to commute and drive back each day so that means he's staying in a hotel. I can't be too jealous of his hotel/spa vacation this time because they have him working the night shift.  Yuck.

So he comes home on the weekend, exhausted and trying to adjust to regular day time hours and get his sleep pattern back on track for a couple of days to then goes back and starts it all over again. He says the worst part is missing the kids.  So this weekend he had all day Saturday with Jimmy, they took a day trip to Dixon and went riding at the track and he spent most of the day on Sunday with the Doodle.  It was kind of a humid and rainy day so we watched movies and made soup and grilled cheese sandwiches. 

We're not sure, but we don't think the Doodle actually knows how long his dad is actually gone for.  We think he must just think he was at work for a very longggggggg work day when he's been gone all week.  Sunday the boys rode motorcycles around the house - which is one of the Doodle's new favorite things to do.  Jim says he seems so relaxed and "normal" when they're riding.  He's not all crazy and freaking out.  He said the motorcycle actually calms him.  Maybe it's the vibration or the noise--or just being in his daddy's lap going fast that he likes.  When they come back from riding around on the property, I know that the Doodle is pretty mad and cries and sits and does the sign for "MORE".  One good thing is, he's so used to wearing his helmet that he doesn't mind at all putting on his motorcycle helmet.

Last Thursday night when he saw Jim at the door, he was pretty happy to see him.  He gave him a huge hug and wouldn't let go.  It made Jim's weekend.  The one who misses Jim the most though (besides me of course) is Jimmy.  He hates it when his dad is out of town.  But they write letters to each other and text and call each other several times a day.

Doodle-proofing

It's kind of like child proofing but different because we're dealing with a very ingenuitive 4 year old who has the attitude "where there's a will, there's a way".  He's got a handful of things he obsesses about--so we have come up with creative ways to divert him.  The problem is once you eliminate one thing from his determination, he is quickly onto the next thing. It's a rarity that he is just calm and sitting.  He is constantly on the move and repeatedly into something he's not supposed to be.  Toys?  Nah.  He'd rather pull the lid off something in the refrigerator or stick something in the microwave and turn it on.  I just put a padlock on the tv cabinet with the dvd player because he could masterfully operate all of the electronic equipment.  I had to move our tv/dvd in the bedroom way up high and get rid of our armoire that I loved because he could reach in there and destroy things. 

Our remotes are all kept out of reach.  The DVDs are hidden.  The pantry now has a lock. Our sliders all have tension rods in them.  We tie the refrigerator closed with a red ribbon which must be tied in a double knot or he can get it open.  We block our front door with a couch.  The stereo and cd player have been purposely unplugged and the pine cabinet it sits in has been nailed shut.  Come to the front door and it might take a minute while I move the fancy furniture arrangement which acts as a barricade to keep him from escaping.  I've asked Jim if it might be possible to bring home some cement K-Rail from one of his jobs because if the Doodle really puts his back into it, he can move the furniture--yes, he's strong.

Besides salsa and taking the lids off of drinks and dumping them out, his absolute favorite thing to do now is to run out the front door and try all the car doors to see if by chance any of them are unlocked.  He loves to sit in the car and press all the buttons and flip the mirror down and check himself out and it's a big Christmas bonus if we've left the remote for the garage in there.  He likes to get all the garage doors opening and closing at the same time; it must make him feel like he's in charge of something grand.  He likes to play Chinese fire drill and get out and run around the car and get back in and climb over the seats and get out and get back in and so forth.  It's not hurting much--but I fear he is going to slam his hand in the door because car doors are heavy for a four year old and I know it's a matter of time. What's that you say?  Try locking the car doors.  Uhm, yes.  We do that.  He now will go into the drawer where we keep our keys or even into my purse in order to find the keys and he runs outside with them--hitting the buttons on the key-faub-remote.  Sometimes he gets lucky and hits the unlock button, other times he just sets off the alarm.  Regardless of which thing he is ocd'ing about--I am constantly yelling "No, No, No, No, No".  The word "NO" does not phase him.  Neither does: Stop, Put it down and Get Back Here.  What happened to the good old days when he would walk around pushing his little cart and obsess about that?  At least that was just one thing to obsess about and it was managable and harmless.

I'm not sure what this all means.  I keep waiting for him to grow out of "it".  But I know he won't.  The OCD is part of him just like his brown hair and green eyes.

I can't fathom the joy that these odd things bring to my son.  He'd rather turn the lights and equipment in our house on and off than play with fabulous toys that he has which he has no interest in.  Obsessive Compulsive Disorder--just one more special little gift from the family of autism we get to enjoy.

Hypocritical Parenting 101

I must be the worst parent and worst example there is.  Years from now, when Jimmy grows up, I'm sure he'll remember my famous last words: "do as I say, not as I do". 

"Jimmy, stop yelling."

"But Mommy, you always yell. Every day."


Jimmy, I know it's hard but try to patient with your brother."

"But Mommy, you have no patience."


"Jimmy, you need to go to bed, you really need at least 8 hours of sleep."

"But Mommy, you stay up until 2:00 am all the time."


"Jimmy, it's not nice to swear it doesn't make you cool."

"Then why were you screaming those bad words at that lady in the other car?"


"Jimmy, you can't just eat junk.  You need to eat your vegetables."

"But Mommy...why aren't you eating your vegetables?"


"Jimmy, you don't have to spend every single penny you have just to be spending it."

"But Mommy..(big sigh)...oh never mind."

Progress in Doodleville

Since school has started just three weeks ago we have a different Doodle. 

He's changing daily, he seems more alert and more interested in things in general.  He LOVES to play with Jimmy now, before he wouldn't give him the time of day, although he needs to take him in small doses.   He's able to wait a little longer for things without freaking out and melting down (insert big sigh here) and he's eating bananas and drinking out of a cup.  He's gotten really good at feeding himself and he seems to be a little more independent at home.

The best and most encouraging change for me is that he is making different sounds and he's making these sounds on purpose...he's gone from vowel sounds only to now doing some dehdehdeh's and some fuh-fuh-fuh's.

I even put my big girl panties on and took the Doodle and Jimmy out to dinner tonight at Applebees--we went a little later in the evening so there would be NO WAIT--we went to a family restaurant with lots of noise (to drown out the Doodle), I brought snacks--and as soon as we sat down I explained our situation and told the waitress that he was Autistic and has NO sense of time or waiting and asked if she could bring us chips and salsa right away.  It worked out great.  Once the chips and salsa came he was completely entertained until his dinner came.  We ate and when I could see things were getting a little sketchy, I asked for to go boxes and the check and we were there before any damage or screaming could be done.  I had to explain to Jimmy that unfortunately he had to kind of pick up the pace and eat that we didn't have time for a lot of conversation.  I think he understood but I felt bad for rushing him.

All in all I'm watching the progress and it makes me so happy.  I'm doing my best to take things for what they are and not get my hopes up too high and understand that the Doodle's development is on a completely different schedule and wave-length than most.  Que Serra Serra.

Where Did It Go?

Without stating the obvious, it amazes me every year how much faster time flies the older you get.  I remember as a kid, sitting and waiting for hours for things to happen--to grow up and have a new birthday come or a holiday like Christmas come.  Everything took forever. Things could never happen fast enough.  The school year drug on and on.  Dishes on Christmas Eve took hours to get done before the presents could get opened.  Driving somewhere seemed like it took an eternity in the boring car, work days drug on and (ok so some things haven't changed).

Now, time passes at lightening speed and some days it doesn't feel like there were really the right number of hours in the day that should have been there.  And before you know it, it's the end of the week and the weekend is over in a blink and you start the whole process over again--and now your 42 years old with just 109 days until Christmas and you need to get to the grocery store and feel guilty if you want to take a nap.

We made it through this Labor Day, which to me, means summer is (basically) over.  School has started, we're almost to Fall.  Pretty soon Jimmy will be turning 11 and we're already talking about what to be for Halloween.

That means, Thanksgiving will be rolling around soon--and then the festivities of Winter will be upon us in full swing.  43 years old is just a blink away.  I say that with Hope now because I know that life is a gift and a blessing and even though I get busy and overwhelmed and want to scream into a pillow, I can't forget that no matter where the time goes.

Each year, I never catch up and each year I seem to be less and less prepared (for things) even though I'm fully aware "they're" coming and, like some kind of out of control freight train, I can't stop it or even begin to slow it down.

Oh well.  It's 11:03 pm right now and the day is damn near over.  All the projects I wanted to get to this weekend seemed to get pushed off as if I will have more time this week to get them done, except that's just it, there's never MORE time.

The Witching Hour

It's 11:30, do you know where your little witch is?

One of the little gifts of autism that keeps on giving for us is the insomnia and bad sleep patterns.

We've been through it all in the middle of the night:  sleep apnea, night terrors, infantile spasms, teeth-grinding, bed wetting, seizures. 

Sleep is no longer restful for me; not when you wrestle a 48 pound back-kicker all night to give you an inch of your pillow back.

It's hard to get this little guy in bed and asleep by 11:00pm.

The 7:30pm and 8:00pm catnaps don't help either.

If he goes to bed, say 9:00pm, he's up at 11:00pm and it's even worse than keeping him up late.

"He walked into the party, like he was walking on to a yacht.

His (witch) hat strategically dipped below one eye, his jammies were apricot.

He's so vain.  He probably thinks this post is about him, he's so vain."

Autism is Lonely

I can honestly say I've never felt more alone than I have in my cocoon of autism.

But, on the bright side, in the last week I have connected with two other moms with children on the Autism Spectrum.  The autism spectrum is so very wide and vast and different--it's hard to find someone who may have a child that is the same age and with the same issues.  But we're all connected and get it, you can see that by the identifying us with the same exact look of exhaustion and pain on our faces.

Today I met my new friend for coffee and she was so very kind.  She shared so much with me, and that takes a lot.  She opened her heart and her life to a complete stranger and I did the same. 

It's completely different talking to someone and knowing that what you are saying is being heard loud and clear, and the best part is that there is a level of empathy there that others cannot comprehend unless you have been in our shoes and have to experience what we experience on a day to day basis.  It felt like a huge weight was lifted just knowing she understood what I was saying and not judging me.  I didn't have to choose my words carefully or not mention something.  Today I could just be me, the Angela with the autistic son and the stressful life filled with worry and about a hundred other emotions.

Like it or not, Autism is my (new) world.  And as much as I've tried to hope that one day the Doodle will magically get better, I need to be prepared for the fact that he may not.  And that's ok to.

Is lonliess in God's plan? 

I know that he has a plan for us.  He has a plan for the Doodle and while I hate to accept it, at some point I must surrender and realize that I have no control over the Autism severity that the Doodle has.   There's `lots I can do and try to do and hope that they might improve and help his "condition" but is there really a complete cure for autism. I wonder.

God Lives Under the Bed

A beautiful story, sent to me from a good friend. 

God Lives Under the Bed

Written by Kelly Adkins

I envy Kevin.

My brother, Kevin, thinks God lives under his bed. At least that's what I heard him say one night.

He was praying out loud in his dark bedroom, and I stopped to listen, 'Are you there, God?' he said. 'Where are you? Oh, I see. Under the bed...'

I giggled softly and tiptoed off to my own room. Kevin's unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in.

He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he's 6-foot-2), there are few ways in which he is an adult.

He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.

I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?

Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed. The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.

He does not seem dissatisfied.

He lopes out to the bus every morning at 7:05, eager for a day of simple work. He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day's laundry chores. And Saturdays - oh, the bliss of Saturdays! That's the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. 'That one's goin' to Chi-car-go! ' Kevin shouts as he claps his hands.
His anticipation is so great he can hardly sleep on Friday nights.

And so goes his world of daily rituals and weekend field trips. He doesn't know what it means to be discontent. His life is simple. He will never know the entanglements of wealth or power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.

His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it. He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax. He is not obsessed with his work or the work of others. His heart is pure.

He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue. Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God.

Not confined by intellectual reasoning, when he comes to Christ, he comes as a child. Kevin seems to know God - to really be friends with Him in a way that is difficult for an 'educated' person to grasp. God seems like his closest companion. In my moments of doubt and frustrations with my Christianity, I envy the security Kevin has in his simple faith.

It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions. It is then I realize that perhaps he is not the one with the handicap. I am. My obligations, my fear, my pride, my circumstances - they all become disabilities when I do not trust them to God's care.

Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of God.

And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I'll realize that God heard the simple prayers of a boy who believed that God lived under his bed.

Kevin won't be surprised at all!