Not Running Away, Just Running

My back hurts. A lot. And my makeup is smeared and my ankle hurts, and my wrist is a little twisted. I am sort of a wreck, but I would chop off a toe with a dull blade if that was also necessary to keep my son safe; a little injury is worth it.. it's always worth it. I will feel better in a few hours, after the adrenaline surge dies down and the kink in my back is ironed out with an anti-inflammatory.

Jake ran away from me in a busy parking lot 20 minutes ago and despite that diagnosis of cerebral palsy ataxia, he moved so quickly that the only way to get him back was to leap and tackle him.. on the asphalt, in the middle of a moving car line at the pick-up where his sister had camp today.

I got a hold of him, straightened myself up and walked on the  campus, my hand firmly around his forearm, no longer bothering with his hand at all. A very kind counselor who could not possibly have been more that 18 noticed me, and must have known that something was up by my demeanor. When she asked if I had a question, I broke into tears and said "My son just escaped my grasp in the parking lot and got away from me. He's fine, but I need to get it together before my daughter sees me." She graciously said, "Why don't I go get her for you and you can take a minute."

Jake and I sat there on the edge of the little playground, me firmly holding a twisted knot of the back of his shirt, his hands sifting through the tan bark. I wiped my tears, assessed my physical damage, pledged not to be angry with my son, and took a deep breath.

Lucy bounded out with the sweet counselor who brushed away any of my apologies as completely unnecessary, and as we left, Lucy said, "Mom, I want to play on the play structure." and headed two feet away from me. I reminded her that she was headed to a birthday party and she happily came next to me and we all got into the car.

Then I had this flash, not of how frustrated I am, or irritated, or disappointed that such a simple errand could not be completed without major incident.. but a flash of how my son must be having all of those feelings and more. When he "ran away," he probably just wanted to play in the tanbark at the edge of the parking lot. Sitting right near our car was a little slice of what my son must think is paradise. That big fresh pile of tanbark just waiting to be spread abut the flower beds at this beautiful elementary school campus, siren calling him, and he probably just wanted to put his little man-hands through every piece of it.

He wasn't necessarily running away, he could have just been running. And how could I possibly know  the difference?

Can you imagine having all of the desire to do something as simple as putting your hands in tan bark, and being unable to do it because you just couldn't tell anyone that's what you wanted to do? Lucy asked to play on the play structure, turned away from me, and I certainly didn't lunge after her.

But, of course, she came back to me. And I know that she would do the same thing in a parking lot, or an airport, or Disneyland. She comes back to me, and before she leaves, she looks both ways to make sure she will be safe. I can count on that. I taught her, and now she knows it, and that's the end of that, and anything other than that is her being naughty, but even at her naughtiest she is always safe.

I remember having a discussion with one of Jake's teachers when he was at his previous school where they had proudly put "I want to go to the bathroom." push-talkers near the door frames of both exits of the classroom, so the children could press the button on their way out the door. I thought it was a great idea, except for the part where Jake is not allowed to get up out of his seat during work time. How could he ever communicate a desire to go to the bathroom if the icon is across the room? How humiliating, how degrading.

Does he live his life with the hope that I will be there to intuit his needs? That his next caretaker during the day will be able to understand his subtle facial expressions and vocalizations. Here I was, so worried about Jake being injured this afternoon, but I'm not sure that it isn't perhaps more painful for him living every day, just hoping the people around him will take a moment longer try to understand what he wants, where he wants to be.

I am crushed to think of how many times I have been impatient with him, wishing he would just do one single thing I asked him to do, when he is probably wondering if today will be the one day that he gets to choose to play on the play structure, linger. But I can't let go of his arm; I just don't know that what we have tried to teach has stuck in there.

And how will my son ever prove to me that he will come back if I can never trust him enough to let him leave?

****

This post was an editor's pick today at OpenSalon.com

A Very Belated Thank You

I am a very grateful person. Every morning, every evening, and many, many times throughout the day I am thankful for my friends and family. When I unlock my door, not only am I thankful that my key works, but that I have a door to open.

When I am standing in the midst of the debris and various body fluids that seem to accompany parenting, and the additional food on the floor that is brought on by a child with disabilities, I am thankful that my children are healthy, and with me. I am so grateful when my husband, who has somehow managed to put up with me for more than 15 years, walks through that door again, and helps me get our life cleaned up, and set up for our next adventure. I say, many, many, times a day to myself: I have a great life--and I actually mean it.

I try to tell the people in my life that I love them, that I need them, and when I find their jokes funny. I almost always write a thank you note.. oh yes... I really do. I write them.

and then they sit.. in a box, or in a pile of unstamped mail, in between the seats of my car. They get lost in the shuffle of my life. They used to get to the people I want to thank. I even used to send cards to people randomly just to let them know that I care.

So, for all of you who are waiting on that thank you card.. for my dearest friends who do too much, and for the gracious hostesses who have served me well, and those that have gifted my children all of the amazing things we have around our house... I'm working on it.

If you get a note in the mail, or on your porch, or in your child's little cubby, and it's dated 2010, or even 2009, please know that I've been thankful for you that whole time. All of those days between you adding joy or brightness to my day, or saving my ass, I am so grateful for you, and for you, and you, and especially you.

I hope you know that.

Summertime and the Living is...

easy? hard? scattered.

Things are scattered. I think I have more time, but there are more children around, but Lucy has been at camp in the mornings, and at a play date nearly every afternoon, so really there are less, but Jake requires constant monitoring, so I am sort of trapped in the kitchen dining area of my house, or the back yard, so I can't get anything done. Oh, and I feel guilty for not playing with him or taking him any exciting places.

Everything seems to be breaking around here, so I've been running around buying parts, or taking things apart and looking at online schematics, and trying to figure out whether it is better to buy new or fix the old. I was able to fix the washing machine, which made me feel pretty awesome and also pretty annoyed that I spent more than $200 paying someone to fix the exact same problem when it broke last September. The dishwasher is no longer making that terrible noise after I took the entire thing apart and cleaned every tiny part of every tiny part. When someone says "They don't make 'em like they used to." I will now nod my head in absolute agreement.

I have a lot of goals for myself this summer, but I just can't seem to finish anything. Which leads me to one of my first goals of course... I need to let some things go, including giving myself a hard time about everything.

Here are some other things I am going to let go of this summer:

• other emotional baggage
• old cookbooks
• ratty t-shirts, even if I think I should "keep them for painting"
• baby toys, unless Jake really, really likes them
• towels we have taken, almost always by accident, from Super8, the gym, and various hospitals. They are thin and nasty and never ever get soft.
• paperwork that does not matter. Seriously, do I need all of those old phone bills? WTF?
• clothing that does not look good on me
• shoes that do not fit
• beauty products that are past their expiration 
• luggage that is beyond repair
• cracked laundry baskets
• pens that don't work
• mugs I do not like

and that is just the beginning, but I am trying to make small goals and meet them rather than say "I will clean everything out of my house." That makes me feel defeated when I can't get it done.

I need our house and our life to make more sense than it does now. If it is this hard for me to accomplish great things here, I can't imagine how much harder it must be for Jake who has difficulty processing. He works so much better in an orderly environment, and I have more patience for sitting and teaching when our life isn't strewn about my field of vision. Lucy will benefit too, she is trying to figure out how to prioritize things in her world, and learning habits which will follow her for a long time.  If I can teach her now how to have a place for things, how to make order out of chaos, she will go farther and do more in life than I have.

Jake goes to summer school right after the 4th of July holiday, and Lucy has at least two more weeks of camp, so I will have some quiet sorting time when they are off being crazy kids, but it isn't too much longer until we need to prep for our cross-country trip. I have already begun the lists for that.

and by the way, making lists is a great way to avoid doing work. I am an expert.

Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

• more verbalization
• more silliness
• less able to sit in class
• more clearly visible by his reactions that he is "there" because he is making sounds and laughing appropriately at funny things
• I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.

Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:

• Lots of great memories for kiddos and grownups
• Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
• Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
• Nagging feeling that I am behind

I have finally done all of the laundry:

• can't find any time to fold it unless I am awake at 2am
• can't find anything because it is in a gajillion baskets all over my bedroom
• brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry... is still magically not going to be folded and put away.
• constant feeling that I am behind

Date night with Descartes on Thursdays:

• happy husband and wife who actually talked...to each other.. throughout an entire dinner about more than just who needs to go potty.
• less cash
• less time to do crappy laundry (see above)

Can I Sit With You? book number two being published this fall:

• whooo hoooo excitement and thrill of accomplishing something meaningful
• constant feeling that I am behind

Lucy is most precious bright star:

• no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
• I am worn out by 10 am each day
• have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
• breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities. 

Finally took care of myself and went to the doctor for shoulder pain:

• not only do I have a rotator cuff injury, but something is f'd up in my elbow as well.
• need to go to physical therapy 2-3 times a week for at least a month
• personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
• guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.

I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

I Forget

Most of the time I forget about the life I kind of expected.

My dear friend, KFJ just sent me a great email...the highlights of their trip to family camp, something they've been doing for years. Our alma mater has a family camp like this one, and I had nearly forgotten that I had sort of pledged to myself as a dreamy eyed senior that I would make sure my family went to The Lair every year to be exposed to nature and to other families that loved their college and education. Silly maybe, but I loved the idea. I was always a Go Bears! sort of ambassador at Cal, and at the time could never imagine that the reason I wouldn't be going to family camp wasn't because we were working in France or Japan.. that the very reason for going to a camp like this would be the thing that stopped me...my kid.

So I forgot. KFJ's oldest daughter Papaya is Jake's age; almost exactly. We have a great(?!) photo of the two of them, Papaya sitting up so nicely, Jake being temporarily propped up by a Bobby so he doesn't take a header. I knew then that my kid was different. I knew, but it was watching my friend from college with her daughter that was just one more shocker that this life was going to be a lot different than I imagined.

but I forgot that too. Maybe that's a blessing of having a kid with weird sleep issues and the ability to nearly conk me out by accident just by getting out of the tub, perhaps the brutality of our daily living helps me forget, just as most women can't remember giving birth. If we remembered how would we do it again.. if I constantly remembered the loss how would I face tomorrow. And so I forget all of those little 22 year old fantasies. That's what they were any way.

We dream so we can set goals and start running.

But tonight I read the email (which I love.. so don't stop sending them Kung Fu...)
and I just wept as I looked at the slide show. Her beautiful talented, smart children looking at the camera, or smiling at their counselor. Performing at the talent show, swimming without diapers, riding bicycles, hell.. wearing a bicycle helmet. Jake won't even tolerate a friggin' helmet!

So I will wallow for a few minutes. It feels a little (okay a lot) indulgent. My child is alive and healthy. My son managed to get through IKEA twice this week, which is more than most kids can do. And when he hugs me I know he means it because it is so hard for him to pause and connect it is not out of guilt or direction; he is doing it to connect. And he smirks when his baby sister is a brat. And he tried to play cars with Sage's daughter the other day. So we are good. And school starts on Monday. And. And. And.

and I am sad. and I can't help it dammit. And envy is the ugliest sin I can ever imagine, and right now I want a little bit of what someone else has, and I hate HATE being the person who wants what others have because I already have so much.

I just wanted to go camping. I just want my children to take a picture together.

I just want to forget again.

Hands, Feet and Mouths..lots of Screaming Ones

So my sistow is going to leave early because her boys now have hand foot and mouth too. Jaster didn't like the idea of his boys being so far away from him, sad and sick, so he hopped in his car this morning to come get his family. A bit irrational perhaps, since Demanda and I were going to come up on Thursday night, but a parent's love is kooky like that. I've never been apart from my kids when they were sick, so I can imagine I would be doing the same thing. Of course this week is sort of a big one in his job, since he's a pastor and all, so I'm thinking he weighed one kind of stress against the other and decided that an extra round trip to the Bay Area was worth it to not worry about his kids.
We had a hard week last week. Descartes had a board meeting at the office which always seems to make his office a bit crazy, and consequently makes him a little less available physically and mentally, Jake had early day every single day for parent teacher conferences, SEPTAR had a summer resources meeting which I arranged via a gajillion emails with strangers, then I went to the meeting of course, Jake's aide canceled for no reason and then a good reason for three of five days, I had a doctor's appointment where I had to decide whether I was going to take a medication to take care of myself and finally get Lucy all the way weaned (yes she is still nursing, and at this rate will probably do so until she is thirteen!), and on another morning I had to be up at 3:30am to wait in line to sign up Jake for summer camp. Then Lucy got sick. and then I made brunch on Sunday for Descartes' parents and Papa's sister visiting from Canada, and Cookie's sister visiting from New York. So for Demanda, I am guessing it was not a fun place to visit. This week is pretty much easy, and Lucy is better and childcare is available (I am hoping) and now I can help Demanda with her kids a bit more.. and she's leaving. It is mostly to do with Jaster wanting his boys, but I can't help but feel like I have disappointed just one more person.

Duh.

This week has been very very hard with Jake. He has been so "bad" after school, throwing himself around, unable to sit at dinner, screaming, crying, loose-limbed and non-compliant. Jake was so tormented and sad and throwing himself this morning that he:

• cried real tears.
• scared Lucy (not on purpose, but he was so loud).
  
• reduced me to tears during the sock and shoe phase of the morning.
• made Descartes yelp in pain from wriggling away whilst Descartes was still holding onto Jake (Descartes' back twisted a wrong way).
• made me so worried that I decided not to leave the kids alone to shower (Descartes had an early meeting).

Then I decided to try the (DUH!) migraine medecine. 18 mintes later he was calmly riding in the car to school. He was fine all day at school, mellow, (almost like a person who had had a mild seizure?). When he got home I gave him another Maxalt since last time it seemed to wear off around 4pm. He has been the happiest he has been in days.

Duh. duh DUH! One pill and he felt better. One pill. My poor boy.

I do not even have enough room in my heart for the guilt of having not thought of it sooner.

So Are The Days of Our Lives

I received a birthday gift from Bridquet that was so thoughtful... so full of thought and effort that it may be up there with the most precious gifts I have ever been given.

On the right-hand side of this blog there is a little note, that has been on there since I started writing... something about the fact that for 15 minutes of each day I think that we are not going to make it... it is all too much, and I am no good at this job, and I am overwhelmed, and my body aches, and Jake is never going to be independent. I am not trying hard enough, and I have nothing more to give to my children and my marriage. I have lost myself. I am failing my special-needs child. I am not using the gifts God has given me. I have no faith. I am tired and there is nothing to serve my family for dinner. My house is a mess. My vocabulary is weak. My hair is thinning and has split ends. I never sing anymore and I am too quick to judge others. I have no patience. I am lost and it is all hopeless.
...and then minute sixteen comes and we are all going to be okay. Really okay. All of the previous moments are nearly erased (save for the aching back)...and we just move forward. We do our best; praying for great things and planning for the realities of our life. I am the strongest woman in the world, and possibly the luckiest.

Well Bridquet bought me a quarter-of-an-hourglass. It is beautiful and looks very much like the photo here. What is even more meaningful are the words she spoke to me..and I am paraphrasing.

For those 15 minutes it is like you are in the hourglass. Trapped and struggling, slipping bit by bit with nothing to grab on to, nothing to stand on. You are stumbling and falling and nearly buried alive. It feels like you will never get the right side up again.

and here is the part that was so kind

You are the sixteenth minute. You land upon the top of those grains of sand and you are grounded and standing tall and everything is under control. You are the sixteenth minute for your family. You are what makes it so it will all be okay again.

am feeling rather blue about Jake right now. His teacher, aide and Cookie (Descartes' mom ) all noticed his right foot "being favored" I finally saw it today.. when I really looked. He is not favoring his leg.

His foot is actually dropping and dragging. His right foot. is dragging and turned in.

is it nerve damage? from a fall in the back yard or some other time? He had a lump below his kneecap the size of a golf ball a while ago...

is it something worse, like a de-myelinating disorder?

do we need to get another MRI?

is he in pain?

my poor boy.

just now, I almost thought "poor me", or "why me?" I just want to celebrate our book right now.. I want to have that feeling like things are on track. I really hardly ever, nearest to never do that poor me crap.. because if it has to be someone.. I would NEVER wish this on someone else, so "why not me?" is where my mind rests.

Still Coughing After all These Days

Poor Jake, he coughs in his sleep.
Descartes coughs and he can't sleep.
Lucy coughs so hard she throws up.
I am a little worried that this cough and cold are not related to the laryngitis and cough I had last week.

We are a tired, sort of grey family.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Jake went to school today. I called to check on him and I guess he was "not himself".

I feel very disconnected from him right now. I'm not sure I know what "himself" looks like. He just seems so non-compliant and irritated with me. Which of course makes me tired and try as I might, I'm sure I have less patience than I usually do with him.

We haven't finished the backyard. It will be winter soon anyway. How will I entertain him after school? I don't want to force him to sit down and do more work, and that's what anything seems like when he doesn't want to sit still (after sitting all day at school).

I am going to check out some ABA in action.. see if something might be good for Jake.

Always behind. Always feeling like I am not doing enough for him, or doing right by him.

Holy Wow!

Have you even been over to Can I Sit With You?

Lea Hernandez has just completed the cover for our book. This is very exciting. If I get on this and help Squid we will actually complete this project and get this book published!

I have been a huge flake.. okay actually my computers are all infected and crashing and making me extremely frustrated, but it makes me feel flaky when I am not doing more than everyone else.

Yeah, you read that right. I must do more than everyone else or I am a flake. Kind of hard to do when you have very capable friends.

We're Going to the Zoo, zoo, zooo. How 'bout you?

Hurrah! I took both kids to the zoo today. Yeah don't think I am quite so brave. I went with Squid and her girlie munchkins and one of Iz's precious friends. The older girls helped a LOT with Lucy, and Jake was mostly entertained by the ramblings-on of all of us motor-mouths.

Jake went on the carousel without a seat belt, on an uppy-down horse with me only standing next to him. First time a grown up didn't need to help him stay on. He held on with both hands and everything.

We really had a lovely time. Perfect weather. Well-mannered children. Not too crowded. Howler monkey SUPER LOUD, and no one lost any shoes. Stayed a perfect number of hours. Lucy did get mean and grabby with Mali at the end of the day, but she was just tired. They sat next to each other in a stroller all day long with no problem.

We said our good byes then took the Great Highway and Skyline home, watching the waves roll against the amazing California coastline....and I had a diet coke in the car with some ice left in it...perfect!

then we had to go to Comcast...which is sort of like saying we had to visit hell..and that story is so painful to tell right now that I simply cannot

highlights of Comcast visit:

• Jake screaming/whining/crying the entire time in line with 10 people in front of us.
• No one opening or holding the door for me in spite of having a wheelchair-screamy kid and a wriggly little girl in my arms...oh and a DVR. Seriously a guy walked in and let the door shut behind him without even looking. Does anyone have manners? I don't want special treatment, I just want courtesy.
• All three of us crying in the car on the way home.
• Jake being so worn out that he sobbed himself to sleep on the floor of his room when we got home...at 4pm...he is still asleep in the clothes he wore to the zoo...with no dinner, no new diaper.
  

i have opened a bottle of red wine. please do not disturb the momma

How to be a Bad Parent Lesson #6347

...let your kids play in dog shit....


You may think that your kids are safely playing on the secured, no-way-out deck watching the street scene from the front of your house. You might think, "Hey. I bet my kids are getting hungry for dinner. I'll just run upstairs and make them something and have it all set when they come up. Wow, I am such a genius."

I thought all of those things. And then, just as I was setting cute little trays onto the counter with home made shredded barbecue chicken, persimmons and raspberries for Jake, and a little perfectly cut chicken salad and cheddar cheese sandwich for Lucy, paired with strawberry yogurt, persimmons and grapes... chocolate milk for the girl, whole white milk for the boy... happy mommy chair between the two to facilitate more consistent eating....just as I was all set. I realized it was too quiet. I had been upstairs for 7 minutes.

There is a reason Jake has protective supervision.

Jake had climbed OVER the baby gate and gone into the side yard. The side yard is a point of contention in my marriage because this is where our TWO golden retrievers relieve themselves. It is also where Descartes very, very, rarely and only with considerable nudging picks up said "relief packages." I clean it up once a month if Descartes doesn't; this is one of "his jobs" in our divided labor household. He has not cleaned it up, and I did it two weeks ago. (It has since been cleaned and sanitized mom...so no comments on that please!)

So there is Lucy hanging on the baby gate pointing at her big brother who is standing squarely between 15 gigantic piles of poo. There is none on him, none on his shoes, none on his hands. He is in the middle of it just standing there.

AGHHHHHHHHHHHHH!

This is one of those moments in parenting where I had to **really** think hard as to how to fix this situation. No one was really in danger.. those situations I have down, no problem... but when there are moments like these it is harder for my tired mind.. maybe it's because my adrenaline doesn't kick in. Moments like these.. I need a Double Strength Diet Rockstar.

So I put Lucy upstairs and gated her in and locked the dogs with her then I went around the back of the house and down to the side yard and plucked Jake out of the poo. It was only on his way out of the area, with mommy having startled him, that Jake stepped into a big old stooopid stinky pile of it.

I closed the gate behind us, stripped Jake down and marched him straight into the tub inside the house, shutting the door behind us so Lucy would not think that it was family bath time.

I used the rest of the Hibiclens and a bottle of dial soap. I trimmed Jake's nails and emptied the water a few times.... and there was never any poo on his body at all.. just his shoes.

Then I bleached the tub, and walked out of the bathroom with Jake.. only to find Lucy had fed her dinner to the dogs, and had started to eat Jake's dinner. Lovely.

I have now left my children unattended and let them play in poo and after all of that I still found myself trying to make [more] dinner while the kids are whining and ready to eat "right this very second."

Somehow we managed.

By the time Descartes got home I had both children fed, bathed, jammied and in bed.

Phew

i hate when this happens

I just yelled at my kids. I know we will all live. I didn't hit them or "smack" them or push or shove, and I only yelled once but I did it.

Descartes and I decided when we were first engaged that we would not yell in our home. I grew up with a family you could hear down the street. All passion and loud and then it was done, no hard feelings (mostly) Descartes grew up in a family where there was slow simmer for years, then someone would blow up into little pieces.

Somewhere along our dating way we got into an argument and I raised my voice, as I was taught to do, to make my point. He very calmly said "You don't need to yell at me. I will not participate in this conversation if you are yelling."
Well there is no better way to get me to be quiet, than to threaten me that you won't talk to me anymore. I am a talker... but it hit me then.. I actually didn't have to have a home where any one yelled. Ever. (emergencies excepted.. and since we rarely have a week without some sort of crisis, don't worry our house is till plenty noisy.)

But tonight I did. Lucy and Jake were whiny at 3:15, hungry and whiny, so in between throwing snacks at them I started to make dinner, as fast as I could. It was a quick meal, burgers (no buns), strawberries, bananas and home made sweet potato fries. Any whooo. they both rejected the meal, eating strawberries only. Then Jake got squirrelly in his chair and when I went to get something on the floor (his cup?) he smacked me in the head so hard my contact went to the back of my brain. Lucy stood up in her high chair to get out on her own .

I yelled. Not even sure what exactly I yelled.

Then I took them both out of their eating spaces and cleared the plates and said that was it.

then I took ten minutes to get my contact to the front of my head.

Mommy all done.

Jake's Birthday

Isn't he a beautiful boy? I know he isn't smiling in this picture, but he is looking at the camera. He was so relaxed during the whole party. He just took it all in. Relaxed is good. No panic attacks, no dropping to the ground in anger or frustration. He sat nicely next to his Papa, drank his milkshake(s) and I think, had a very nice time. I was able to make a Celebration Chocolate Cake and have it taste fine in spite of its not wanting to rise very well. We have amazing friends with hilarious kids. I think it went off well. Everyone got fed and most people were able to escape with their kids **just** before they melted down.
__________________

It has been a hard month for me. September is always very hard. We normally vacation at the end of August, so we are generally unprepared for the first days of school, and all of the anticipation of "the perfect trip to Hawaii" or wherever is now replaced with the more solid memory of how difficult it is to travel with our children. Then there are new shoes, and a new bus schedule (and a new driver), the weather is funky, some days cool, the next day 90 degrees, and I am always wearing sandals in the rain and knee-high boots in the heat.

September brings the feeling that I have once again left so many projects undone from the summer, that I have failed my kids because I didn't do more...museum hopping, pool play, picnicking, beach sand sifting or camping.

And then Jake's birthday is upon me, and I have no plans. No plans because my son doesn't remind me three times daily for a month that his birthday is coming, as so many other children his age will do. So his day sneaks up on me and then it is here, and I am smacked in the face with the fact that seven years have gone by. SEVEN years and this is where we are. And believe me, we are in a great, great place filled with new development and better eye contact, and wonderful things. But I apparently continue to think, somewhere in my mind, that Jake will be growing out of his --Autism, CP, ADHD, panic disorder-- any day now. So there I am on September 24th, a week before his birthday trying to shove all of my expectations back into the bag and tie it up again, more tightly than before, because it is so unfair to Jake, and to me.

So I tried very hard this year, though it was still last minute, to do something for Jake, and I did figure out that it is better to do something small and manageable, knowing that Jake might enjoy himself. Much better idea than spending a gazillion dollars on something where we may not have success. We got the little banquet room attached to his favorite burger and fry joint and invited some of the people we care so much about...some of the people who seem to care so much about us.

It was fantastic, and noisy, and filled with french fries and milkshakes. And I have now baked the cupcakes for Jake's party at school tomorrow. And tonight I will turn the calendar so that a fresh October page shines upon our wall.

Happy Birthday Tiny Man.

I Won't Buy Hope

Is that wrong?

I am so tired of people taking advantage of parents with special needs kids, offering snake oils and therapies with no proven results, charging parents more and more money..

Selling hope. We have tried thousands of dollars worth of products. I am done.

I refuse to pay for hope. It will have to come from within.

Misunderstandings and Missed Opportunities

I am trying very hard to do a couple of things...

• provide Lucy opportunities that are not simply "tag along to what my special-needs brother can do"
• do things with both of my children at the same time outside of the house.
• actually ask Jake what he wants to do by giving him choices, instead of guessing (mostly correctly) and deciding for him.

Today I had a lovely breakfast with Bridquet and her daughter at one of my favorite cafes.. Lucy's trial run at daycare was cancelled (making me feel so relieved it nearly makes me want to never work again). I got to Trader Joe's buying the much needed 2 Buck Chuck requested by my sister Demanda... I fed Lucy lunch. I picked up Jake from the bus with plenty of time to spare.. I accomplished a lot.. or what I lacked in volume I made up for with success. Small victories are good.

We were invited to go swimming at Squid's house.. lucky us, and I had all sorts of grand plans to take Jake and Lucy and Jake's aide Valerie and head to Squid's house, but in keeping with my above stated efforts, I took a "Yes" "No" card we have taped to the fridge and actually asked

Jake: "Do you want to go swimming?"
He hits the "No" side of the card, but it looks like he may be hitting something (a drum?) next to it, so I remove the object and ask again.

He looks at "No".
I ask him again with the card in front of my face. It is see-through so I can see where his eye gaze heads..."No".

So I ask the same if he still wants to go to Ms. Squid's house and play on the trampoline or something else "No". and a little bit of a verbal "nah".

Then, to double check, I ask "Do you want to stay home?"

I get the eye gaze and a tap on the card in the "yes" corner.

So I talk to him about how that is totally fine, I understand because he is tired etc.

and I pack up Lucy and we say goodbye and we go for a fun swimming session with Squid and her three guppies and another friend and her guppy joins (can every one's kid swim but mine? working on it....)

When we get home I discover that the moment we shut the door behind us, Jake ran to the door, threw himself on the ground and whined/yelled. Valerie explained to him that he had said he didn't want to go and that we would be back..

Apparently he sulked for quite awhile.

Did he think I wasn't going to go if he didn't want to?

When I asked him that question, as I hugged him on the couch when we got home...
he looked me right in the eye, then buried his head into the couch.

What goes on in his head?

As Sage says "Hard to tell jennyalice. It's hard to tell." www.canisitwithyou.blogspot.com

Smells like Teen Spirit, No Wait. It smells like Crap.. Yeah Crap.

Did you know that the spa at Grand Wailea is one of the finest spas in the world? It really, really is beautiful. Descartes and I had a couple's massage on Thursday morning when we were in Wailea and it was absolutely wonderful. Beautiful temperature, the Termé HydroTherapy before hand makes you feel clean and pure and the pre-massage "peaceful pampering continues as a personal spa attendant gives you a complimentary body scrub of Hawaiian exfoliants" Wow, if someone could just come loofah my whole body once a week and gently rinse me off with warm water... I just might make it through this crazy life.

Because this is what happened just before we went to the spa:

My brother’s room was attached to our room, so we opened the door between the two rooms so the little girls could play together, and little Bubsy is in love with Jake, so she is very precious and constantly wants to go look at him, hug him and say "Hi". Since little Bubsy has never really been watched by anyone but family we made sure she had her own nanny… so my kids had one and his kid had one.. so two adults three kids two 6oo+ square foot rooms. Gerard and Pinky had an earlier spa treatment than we did, so they left first and came back first.

Basically we were all in my brother’s room watching the two little girls be extra cute, and we were all ignoring Jake. It is hard because he can entertain himself so easily that it is sometimes possible to forget that we should engage him since he can’t engage us as readily… well he was in the other room (our room) then there was some yelling, and it sounded like he was very frustrated. Then Pinky says “Ewww someone has the poops, bad”. So Descartes went to check Jake and I checked Lucy. Then I hear “jennyALICE! I’m gonna need some help, and Lucy should stay in there”.

Well Jake had pooped, and his diaper had fallen off which explains why he had come to the door between the rooms a bunch of times (lousy mommy... if I only had hindsight all the time.. I would catch all of the cues).

Descartes took Jake to the shower, I took towels to the floor and began scrubbing out what his right foot had stepped in and squished onto the floor. Descartes didn’t know it was on his foot when he made Jake WALK across the entire hotel room. It was a mess. Then Gerard and Pinky had to leave so Lucy stayed in with Bubsy for a bit longer until we had it together… our nanny (who we did not rehire after this incident.. we found another awesome one instead) had arrived some time during this fiasco and was with both little girls and Lisa, the other Nanny.

I scrubbed and blotted and dried and wiped and took a big pile of trash out of the room, and a wash load of towels to the linen service room which was right next door to our room (and told them it was bio-hazard and they asked me to put it in a separate place… nice protocol). So then we left and the room was just a little bit stinky but really not that bad considering. Descartes put out coffee grounds in glasses from our bar service figuring if it can help drug dealers hide the smell of dope, surely it could help one small family with a stinky room... as it turns out you should just spray sunscreen spray.. Hell, that smell covers everything and permeates your clothing through a few washes even once you are home... ahh but I digress.

So Descartes and I cleaned everything up, cleaned up the kid, and popped open the door between the rooms again. We left to the spa in desperate need of some pampering.
It was amazing. Really. Very, very spendy, but worth it. Then sitting on the lanai at the spa I just thought... this is so, so nice. I love my husband, my children are being well-cared for and we are out and about during the day by ourselves.. a true rarity for many adults with kids.. somehow it is okay to go out at night, but God forbid we spend time without them, as a couple, during daylight.

Then we got back to our room. The first words out of my brother's mouth... "Thanks for leaving the door open Jennyalice, now our room smells like shit too. Dude, you guys need to buy some candles."

• I apologized.
• I pulled both of my kids out of my brother's room (where they had been playing, Jake against the sliding glass door, tapping and Lucy playing with Bubsy and both nannies.)
• I closed the door between the rooms.
• I paid the nanny and said good bye to that little 20-something year old.
• I called housekeeping and begged for someone to come clean the floor.
• I started to cry.

My brother's room didn't smell like shit because of the accident earlier.

It was because Jake was sitting in a shitty diaper. A ripe, been-there-since-my parents-left, stuck on and rotting his skin with poo-acid type of dirty diaper.

Probably explains why the little Nanny-girl said "He was sort of agitated the whole time, but he was okay."

It is amazing how quickly 2.5 hours of relaxation and massage can be nearly wiped away.

No pun intended.

Ready, Set, Relax

Turned in a part of my project last night very late ...so I got to spend the day playing with my kids..what joy.

Tried a new "tether" on Jake. Basically, actually I was going to write down what exactly I did, but thinking more carefully after writing this entire post. I am going to perfect the design and sell it...basically Jake is attached to me and Jake can have his hand at his side. It is adjustable for Descartes.

Jake was bugged a bit at first, but was much, much more relaxed for the (quick) grocery store run. I talked with him about how it may be uncomfortable, but it was still a lot more comfortable than holding mommy's hand the entire time.

I was so ready for evil looks from people, and you know what? Only three people noticed. Two of those were little twin boys about Jake's age...and frankly I think they started looking at us because Lucy kept saying "Hi buh, Hi Buh" which is "Hi boys". The only other person was a 40 something year old woman who gave me a look like a therapist seeing a good tool would look. Sort of "Oh. Wow. That is a very simple fix to a very complex social, behavioral and developmental issue."

I am so glad I finally sucked it up and tried it. I have been so terrified that I would need to decide which kid to "save"..and I'm sure I will still think some of that, but it is nice to know that I won't need to chase Jake around a Safeway store.

I am going to perfect this design.. after I see that it works a few times. I did need to watch his toes on the cart wheels and his hands on the products on the shelves. .but no mishaps and got all of the things we needed.

The rest of our day got even better with lunch with Sage and old friends and kids playing and Otter Pops etc.. will need to detail to morrow as I am sososososoos sleepy now and my bed is covered with sweaters that I am not taking to Hawaii.

yeah what- --ever

what ever I said yesterday about forgetting to take Wellbutrin.. HAHAHAHAHAHAH
this morning if I could have double dosed without risk of seizure I would have.

Descartes had to go to the dentist. He pretends like he is not anxious, but I know he is. He just says "I don't want to go". Basically he was very quiet and needed an abnormal amount of prompting to help get kids ready today. He is so good with them in the morning these days that I realize it now makes me a bit irritated when he isn't, poor guy.. just can't win :)

and I am going to try to work on my project today... and pray that Lucy does better at childcare so that she may be able to stay the rest of the month. That is a longer story.

and Jake's aide doesn't come until noon.

and the housekeeper comes this morning, so I am instantly reminded that my house is overrun by clothing (all clean, but still) and I am a failure because I can't even keep my own damn house clean by myself.

and Jake ran FULL STEAM into my ankle this morning. I can apparently handle having my ankle twisted right from under me, or I can handle being stabbed by two troll toenails, but I cannot apparently handle both at the same time without tearing up and wanting to swear, and dropping nearly to the floor in pain. How did I ever give birth? Then he fought me with every single pant leg off and new pants on... then a bit more with a new diaper,

and made me chase him to put his yogurt/meds combo. (this last one being a job Daddy has been doing mostly.. so it was extra irritating to have to chase Jake with yogurt/meds in a bowl with Lucy following and yelling "that, that, that, THAT" because she wants some too. and she can't have even a bite because it has time release Adderal in it and it would do God knows what to that little hellion!)
and so
I am off to take Lucy across the city to her little daycare.