Tragedy, Sympathy and Empathy

My heart is racing, and it makes me unable to breathe. Tears swell up when I try to talk about it. It is a tragic story that has our entire community reeling.

A student from my son's school was killed by his mother. Then she took her own life.

The articles keep indicating that she was overtired, had too much responsibility, and a lack of services keeps coming up. As one writer put it, she was "her child's nurse, his advocate, his playmate, his cook, his personal hygiene assistant, and his communicator. [She] was the mother of an autistic adult child. And she was her son's entire world, meeting his every need from the moment he was born. And she was desperately fearful for his future and exhausted beyond belief."

but she murdered her child, and that's the story. 

If we let this story focus on the hardships of this woman, we are lost. The young man was killed, and it undermines that significance when we read in another article that one could understand what "would drive a parent of an autistic child to commit such a senseless act." Anyone who says they "understand" is reinforcing the idea that my son, and other people like him, are less valuable. It may be unintentional, but that sympathy starts to sound a lot like taking his life is somehow "understandable," because things were hard and the young man required a lot of help. It reduces a person into a list of burdens.

Yes, we need better services, but we have always needed better services. Yes, we need support for parents who are life-long caretakers, and better adult programs for that magic age when children become adults overnight. We need infrastructure and life-skills support for adults with autism. There was a program available for this family, but there really are not a lot of options when kids "age-out" of the education system. But these are all separate issues. These are the things we are working for. That's what we advocate for. And as for worry, there is not a single parent I know in this community that is not concerned about their child's future. Exhaustion, frustration, fear...

It is not a list of reasons why taking your child's life is justified.

A pile of pity on this mother is not going to bring about more services. Are you outraged? Then vote people into office that believe the special needs community has a fundamental right to supports. That might get more services. Talk to your neighbors about shared responsibility and humanity and dispel the myth that we are leeches trying to live off the system. Those things might help get services for people like my son and the young man who was killed.

And I do not believe absolution will encourage people to support me, or my son, or adults with autism. In fact it further ostracizes us; it makes us "other." As a mother of a child with autism I walk under a cloud of suspicion now. Will I snap?  I'll have more people looking and feeling sorry for me as if I have an anchor around my neck--and how will that make my son feel? Most people would never stop to think that showing so much sympathy, not for the victim, but for the person who killed him, might make adults with autism, who may rely on a network of caregivers, feel threatened, and more vulnerable, like there is no one they can trust.

When it is even intimated that this killing was done out of mercy, it changes the value of my son's life. It says that his life is less worth living, but let me be clear there is no sliding scale on my son.

Maybe it's empathy that's needed. Empathy takes more time than sympathy, but if you are able to imagine life as my son then it would be impossible to disregard him. Looking at life through his eyes would give you a sense of what his needs are, and of course what services must be provided, but more importantly you would be able to see the relationships he has. You would see the snarky jokes he's in on and how much he loves his family. You would see that he has intent and tries constantly to communicate what he is thinking. You would see him as a person, instead of "person who needs to be taken care of." Maybe it would change things, but most of the time people just use the narrow scope of their own expectations and desires to determine the value of someone elses's life; most people are unable to separate their opinion from the other person's reality.

And yes, Jack's life is challenging a lot of the time. But no one gets to say that he is less valuable because his life is hard, or because his life is not what someone else expected. He needs help with almost every aspect of his life, and will continue to need a lot of help, but he doesn't need pity, or mercy and if you think he does, why don't you ask him? I'm sure he'd rather have you talk with him than about him.

There are no excuses.

and we have so much more work to do.

for more perspectives, please see these posts:

• Shannon Des Roches Rosa at Squidalicious: We MUST Do Better: Autism Tragedy and Transition to Adulthood
  squidalicious.com/2012/03/we-must-do-better-autism-tragedy-and.html
• Amanda Baggs on Tumblr: Another Murder, Please No
  http://youneedacat.tumblr.com/post/19105518455/another-murder-please-no
• Charlotte Moore at Thinking Person's Guide to Autism: Sam, at Nineteen: On Transitions and Autistic School-Leavers
  thinkingautismguide.blogspot.com/2012/03/sam-at-nineteen-on-transitions-and.html
• Laura Shumaker at SF Gate: Community Building 101 for Adults with Disabilities: FRED Conference provides actionable information
  blog.sfgate.com/lshumaker/2012/03/07/community-building-101-for-adults-with-disabilities-fred-conference-provides-actionable-information
• Kristina Chew at Care2.com: Why Autism Education Should Go Up to Age 25
  care2.com/causes/two-tragic-deaths-and-why-autism-education-should-go-up-to-age-25.html?
• Tiny Coconut at I Have Things: No Justifications
  ihavethings.blogspot.com/2012/03/no-justifications.html

a version of this post was the editor's pick today at OpenSalon.com

The opinions on this blog are my own, and in no way represent the many groups, foundations and communities with whom my name may be associated. 

This may be reposted with proper attribution and links back to this original post. I reserve the right to rescind the reposting of my material. 

Venting Frustration: Mental Health

I think Jake might need to go back on a medication to help him concentrate at school, and be able to sit down for dinner, which he can no longer do unless he is in his wheelchair. He stopped taking the previous meds in the fall, after several weeks of behavior that did not dictate further use of the medication, but before the next round of school I think he should be evaluated... so I put in a request with his psychiatrist at the medical foundation we visit; a place about which I usually have lots of good things to say.

In response to my request for a morning appointment any time between now and the end of ages, I got an email back, saying that since it had been over a year we needed to contact the Intake Coordinator via the website or by phone. The visit to their website didn't take me any further in the process.

So I called them, and was told that we need to do a "patient intake."

Fantastic! She asked for all of our insurance information, and verified our billing address, and my husband's ID numbers. And I got to hear about how the doctor we've seen for five years is going to be an out-of-pocket expense, and of course I know that because it is very expensive to go to an out-of-network doctor; but he is worth it. This guy knows his stuff, and more importantly he knows my kid.

But wait!  As it turns out, Jake's 'regular' doctor is no longer accepting 'new patients' because we are now considered a new patient. I can call back in three weeks and see if he has opened his practice to 'new patients', and continue the intake process. Even though we have seen this doctor six or seven times in the last five years (more than he's seen his dentist or his neurologist), we get to start over.

Oh, and because we are a new patient we get to pay over $500 for a 1-1 1/2 hour parent/child visit, then several hundred more for a 45 minute patient only visit... good luck with that one. And as a reminder, I may not leave a child under the age of 13 unsupervised in the waiting room. Acknowledged.

And, this was just the first phone call before I can even schedule that appointment. Next comes the call from the other half of intake coordination... asking all of the medical history part, except it might be a short call since he's been seen here already. Well that's nice.

So are we a new patient? A kind of medium-old patient? We're like a 'restored' patient maybe? We saw the doctor 20 months ago. If I had made an appointment 8 months ago.. just to "check in", even though we didn't really need to,  it would have cost us $150, and we could just make another appointment with him now for another $150.

This is not about the money for me really though. I am just sad and frustrated, because dammit this life is hard enough already.... why else would I be calling them? At what point in this process are they taking care of the mental health of my child (or me for that matter?) How many phone calls before I can schedule an appointment? How many hoops?

But let this be a public service announcement: If you want to keep seeing your very-important-to-your-health doctor when you need to, ask what their policy is on how often you must be seen to remain an active client. If the doctor has a wait list, chances are they have some awesome policy like this one. Let me tell you how much I wish I had just sent them $150 bucks last year.

Okay then. I cannot take care of this any more today or my head will pop off. I already said the f-word in a conversation with my parents, so that tells ya where I am with it all.

and now I will return to my regularly scheduled packing for a wonderful weekend in Tahoe. We will be adding brandy to the sangria tonight. Have a lovely weekend friends.

*********

an update: the office staff called me Friday afternoon late and we decided she would contact the doctor to get an exception. The phone call I received this morning 7/5 confirmed that the the practice is still closed and I can try in three weeks to see if there is an opening, or start over with the other doctor (who is also out of network... no thanks.)

I am not going to fight this one because I can't have a doctor/patient relationship with a provider who shows this kind of disregard; my son's appointments take approximately 35 minutes once a year. We pay $150 for this privilege. It's time to start looking for a new doctor.

I will not slander the medical abilities of this doctor because he has been extremely helpful in the past, however I will not be recommending him in the future.

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.

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. 

Elevated beta-Alanine

Yeah. So that's what I've been Googling for the past hour. I don't even know what made me look at a 4 year old blood test with a spread of numbers indicating the various levels of amino acids for Jake... but I started looking, and then I really started looking because I remembered that he had elevated beta-Alamine.

So what? So nothing. Every few months or so I pick all of those "odd" things out of Jake's old medical records and Google them again. It happens sometimes that I will find an article at www.pubmed.com

This time I found another parent who has a boy who had a new autism dx and elevated beta-Alanine.

So now there's two of us Googling it, and probably only stumbling upon our own queries.

Anyone else ever had a kid with Cerebral Palsy ataxia, ADHD, panic disorder, sleep disturbances and Autism who had a blood screen that showed elevated beta-Alanine?

Go. You know you want to check that last "AMINO ACID, PLASMA" screen

Regret

I haven't been posting much lately. Twitter has been fun (see right hand bar below) but in general I think I have been very down on myself about how I am helping Jake.. or rather not helping Jake become the little boy we think he can be.

I am constantly tortured by how annoyed I get. How I lose my patience. How I must hire someone to do tasks with him that make me sad and frustrate me and keep me from caring for the rest of my family. I watch other women with their kids, all the things they do to help their kids grow, and I feel a constant, ever constant feeling that I am not doing enough. That I am in fact not doing anything but waiting for time to pass. My feeling of regret for time lost, for therapies untried, looms over me until I can barely breathe, let alone write down what I am feeling.

I am so ashamed that even this outlet can't hold it all. I have the very best of friends and I can't even bring it up because I am so scared they will actually say out loud how disappointed in me they must be. I guess it's time for therapy.

or at least time for me to read Dear Abbey... who I variably read or don't read since I rarely get to a newspaper lately, but this morning I glanced at her Q&A and saw a line that I will keep in my back pocket "regret is the cancer of life".

Is there chemo available?

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.

Our House.. in the Middle of a Storm

Today:

• Sage had to borrow our house for bathing (hope it's okay that I shared Sage) because her house was not cooperating in the plumbing department... sand bags and a new sump pump probably mean she will not be bringing the kids over later for a bath.
• I made a home made chicken pot pie while the power was still on this morning..as it turns out we never lost power and the chicken pie fell into the category of "Uhm, you don't need to make that again honey."
• Jake went out the dog door during a very, very bad bout of rain (while I was changing my shirt..he's that fast). I had to chase him on the deck and bring his wet self back in. Oddly enough, even though we bathe him every single night he still smelled more like wet dog than our dogs do.
• I changed my shirt again.
  
• Lucy emptied the dog food all over the kitchen floor. Luckily it is dry food that had been placed in freshly washed bowls.. but I still think that CPS would not approve of "Chicken Soup for the Soul Adult Dog Food" as a healthy snack for children (again Jake is very quick).
• Lucy climbed over the side of her crib and came back upstairs refusing to take a nap.
  
• I got a migraine and threw up.
• While I was throwing up Lucy got a ball point pen off of the counter and drew all over part of her face (by accident I think.. she was trying to put the lid on and had the lid in her mouth.. hmm do you think she is copying mommy much?)
• While I was throwing up our larger Golden Retriever Chandler (he came with the name from Retriever Rescue.. and yes it is short for Chandler Bing) decided that he finally would deal with the rain and go outside to pee..only I had closed the gate so no one would escape anywhere while I was yakking...so instead.... oh yes, he did.. he PEED ALL OVER THE KITCHEN FLOOR! Do you have any idea how much liquid a golden retriever bladder can hold? Well it is enough to cover a 10x12 (or so) kitchen and the stairs that lead to the back door.
  
• I began to mop? wipe? hose down? saturate with spic and span? the kitchen floor.
  
• I paused and called Descartes to give him an update on where our family was for the day.
• Descartes came home in remarkable time considering that half of the streets in our town are flooded. He also picked up all of our recycling bins that had floated/been wind-gusted down the street.
  
• Descartes convinced Lucy to take a nap while Jake played quietly in his room so daddy could work and mommy could take a nap.
• I slept for 1 hour and 45 minutes..migraine gone.
• We fed the kids and did bath time..except Jake was in a pissy mood and decided to kick his sister so he went into the shower while Lucy took a bath.
• Jake refused to get out of the shower, and while I was dealing with him Lucy pooped in the tub. Fanfuckingtastic!
• Children eventually went to bed, tub got bleached and beers have been cracked.

Lucy has only hopped out of bed once since she went down an hour ago. Big girl bed will be purchased tomorrow.

Hope you had a nice day.

Why Can't I get Any Help Around Here?

Just got a call from school.

Jake may have had a seizure..probably it was weird yawn (since he has been awake since 3 am), but they called and told me that he arched his back and his eyes rolled a little bit, so having not seen it myself.. the Doc will get a call.

in other news from school:

Each morning kids in Jake's class have circle time. They walk to the board, select their name from the field of names and hand it to the teacher. Everyone cheers and says "Yay! You are at school!" or something like that. Jake does it too, and apparently chooses the correct name many times and is generally compliant and follows along and does it independently (his aide, Anna, stays in her seat).

This morning:
"Okay it's Jake's turn"
Jake gets up, walks halfway to the board (maybe a foot and a half). He stops and turns back around to his aide and SAYS
"Gubba,waging pho ewe ANNA!".

the 'Anna' was VERY, very clear.

So they talked a bit about how Jake needs to be independent, and while Anna is his 1:1 aide she cannot do everything for him etc.

Jake walks to the board, picks out his name, hands it to teacher Janice.

The class cheered for him.

He turns, walks back to his chair but does not sit down. Instead he stands in front of Anna and says:

"Iba goma AGHHY art Nog Mutton" (no one could decipher this one) in an angry tone, stomped his foot, threw his arms up and down a few times then

sat down quietly.

The kid has a few opinions apparently.

Losing It

Just found myself on the tailgate of my Not-So-Mini Van crying.

On the tailgate of my Not-So-Mini Van crying in the Costco parking lot.

On the tailgate of my Not-So-Mini Van crying in the Costco parking lot so much that the Cart Guy comes over to see if I am okay.

On the tailgate of my Not-So-Mini Van crying in the Costco parking lot so much that the Cart Guy comes over to see if I am okay, and offers to go back into the store and get the raspberries that flew off of our cart after we paid for them and were racing for the door because Jake could not keep his crazy ass in the big part of the cart and Lucy was screaming to get out of the kiddie seat part.

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

In it For the LoOOOOOOOOOng Haul

this is the longest week in the history of all time.

Valerie asked for the day off, she already doesn't work on Wednesdays or Fridays...so that makes Monday and Tuesday that she was here helping with Jake (total of 5 hours). Thank GOD Lucy goes to Nanny Tidwell's house for a bit on Tuesdays and Thursdays. Jake goes back to school on Monday. By 9am this morning I was already done. I hate that feeling. Probably doesn't help that I COULD NOT sleep last night. Too many things on my mind. I was making lists.. this insomnia and mild panic could possibly be explained by....oh wait uhm yeah....

did I tell you the best part? I got a call from the pharmacy during which I was informed that there is no known date for the delivery of more Wellbutrin. The country is out of Wellbutrin? Holy Crap there are going to be a LOT of cranky awful people out there. I tried taking a generic yesterday and it just made me feel crazy. I know it is supposed to be the same but it is worse than not taking anything. It makes me feel like my brain is soupy and my emotions are all twisted up. So luckily I keep a stock pile which should get me through an extra two weeks past when I should have refilled the Rx.

As if being cookooo wasn't hard enough they gotta make my crazy pills scarce too? Yikes!

Lucy Sleeps! Jake Wanders.

So is there a conspiracy? Lucy has slept through the entire night two days in a row (hmmm perhaps the Motrin at bed to go along with all of those teeth coming in is heloing? derrrr)

Jake has been up and either upset about wet pants (reasonable) or threatening to go out the doggy door (so uncool).

Did they get togethero the other day while I was in the shower and decide that Jake was going to take the early shift for awhile? Make sure Mommy never gets a full night sleep.

Good thing they are cute!

Happy Halloween. Not my favorite holiday....I am thankful that I have little ones to take 'round the neighborhood and we will not be on any major roads dealing with any drunk drivers.

Be safe everyone. Tinkerbell, Mr Incredible and I will be spending the day going from park to park I think.

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.

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.

Actually, Plumbing IS hard.

I have a new dishwasher. I have a new refrigerator. Lucy does not have MRSA on her finger, it is only strep. Jake does not have strep, he only has a sinus infection. I do not have strep. Descartes did not even have a doctor's appointment. My life should be pretty much perfect.

Except Jake had diarrhea at school and I had to pick him up and wait, have I told you about the diarrhea thing? This one really has worked for me. I look at whatever situation is going on in my family.... and I say, "Well, does anyone have diarrhea?" and if that answer is no...then I know right then and there that it is not that bad..because apparently it could be worse because everything is worse with diarrhea don't you think? Now sometimes this does not work because the problem IS diarrhea..but you get my point.

So anywhooo I decided to fix the water at the kitchen sink issue we have had as of late.. for some crazy reason (the last plumber) the cold is hot and the hot is cold. So I went under the sink with a wrench (or seven) and fumbled around trying to fix it and discovered that, indeed I do have arthritis bad enough to not be able to do that.... and also, while I am rather handy, I am also a bit clumsy.

I dropped a giant wrench on the bridge of my nose. Same place where Jake broke it several years ago. I sat up from under the counter (actually without hitting my head on the way out), and sat there and sobbed on my kitchen floor.

"Why God, does everything have to be so hard all the time?"

and then it hit me.

Plumbing is hard. This is why there are plumbers who make good money, and why even very smart people hire them.

but more than that. I think somewhere along the line I think I had started to believe that because on most days, life with Jake is so very hard, that somehow the rest of my life should be easier.

The fact of the matter is:

the rest of the hard things in life might be just as hard for me as they are for other people, I just also have Jake.

and now you are thinking this chick is so dumb.

But really. I think I go around thinking that I know I can't solve Jake, fix him or any such thing; I am trying not to waste any more time on the 'why' of Jake. He is a mystery that I love and am trying to help him be an active part of his world.

...but every other thing on the planet? I should be able to fix those things because they all have answers. Everything else has a rational explanation, so it should be easy for me to fix or do every other challenging thing I encounter. I am smart enough. I have resource enough. I should be able to do it.. and it should be easy for me to do because there is an answer, in a book, on the web, in my head, from a friend...all solvable.

How crazy is that? No wonder I am so irritated with myself all the time.

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.

If it is that hard

for me to open the package of Provolone Cheese... perhaps I shouldn't be snacking on it.

That's all I know.

Grinding Away

Jake actually went to school part of the day today...

oh and just a note to anyone who ever goes on vacation... do NOT open the mail the minute you get home, because at 11 pm there is absolutely nothing you can do about the erroneous letter that states your disabled and institutionally-deemed child has been dropped from Medi-Cal, and the charge that someone fraudulently made on your MasterCard in Australia buying flowers, which you had already had reversed, has been put back onto your card because they do not have all of the proper paperwork. You can however pay your bills online if you must....or , like I did, you can marvel that after a crazy spending-spree kind of summer there is still money in the bank, and auto-pay is working just fine..

okay back to Jake going to school.. new aide in the class, same aide for Jake, same great teacher....and FOUR new kids.. making a total of 14 kids. Jake is the only one with a 1:1. I walked in and it looks like daycare. The new kids.. not a good match for the classroom. and one of them definitely needs a 1:1 if he is going to stay. I am very sad. If they add another aide Janet might be able to make it work. She is a great teacher and is very calm and has things under control... but if she doesn't? Well, I have seen it before that Jake's 1:1 suddenly becomes a little bit more like 1:2 or 1:1.5 because what is the aide going to do, not help? We fought hard to get him a 1:1 and he really needs it. think this year is critical for his development, and with 14 kids in the classroom I do not think he will a)feel comfortable and b)get the attention he needs. He is capable of academics, and if the class shifts more towards life skills (which he also needs, don;t get me wrong, I know my kid is delayed.. not in denial no need to "sit me down").. anywhoo if it is shifted to an all life-skills class I will be very disappointed. I am going to talk with the principal tomorrow and ask about getting the classroom another aide. The class list on the wall outside of the office lists 10 kids.. so they dropped those four new kids on Monday morning. Kudos to Jake's teacher for being able to figure out on the spot how to organize them into work groups for the activity centers.
okay must make dinner for starving Hawaii time children... just put them in the hose in the back yard. this 90+ degree weather is killing me.