Where's that Damn Mask?

So this has been a rough week for me. More rough than normal. Jake has had migraines every day and he's out of school, and therefore not following his usual routine, so he's basically been out of sorts, and throwing himself around and crying a lot and whining and whining. And Lucy is struggling with sleep issues having a difficult time letting her body rest when her mind is still active (OMG she is so my daughter!) And of course Jake's aide has been amazingly late or absent.. even though I have begun anticipating her tardiness, the not showing up on Monday followed by the 1.75 hours late on Tuesday was just more than I could have possibly accounted for. And we are leaving for a camping trip with the in-laws and I am doing most of the meal planning, purchasing and cooking. I still need to make two quiche and a birthday cake today.

I had friends who needed help this week with their kids and I couldn't do it. I know I am not responsible for everyone else all the time, but most of the time I try so very hard to help other people out because I really, really know that feeling of needing help. And this week I couldn't offer it to anyone else, because I am barely okay myself.

On Tuesday and Wednesday nights, after my children were tucked into bed I proceeded to escape my house and my life. Tuesday drinking and hot tubbing and singing along with music so loudly that the cops paid us a visit, and last night out in San Francisco with friends from Business School most of whom don't have kids, sipping expensive wine in a swanky place co-owned by a guy from Barcelona. I drank too much both nights. I stayed out too late both nights.

This is a perfect example of me taking care of myself the wrong way.

I was so mentally exhausted when I started this week that I had no where else to go but down I think. I didn't help my friends, I didn't accomplish anything around the house or do anything very fun with the kids because I couldn't count on the babysitter. I just haven't felt right all week long.

and then I remember that this is how I used to feel all the time. Jake, his episodes before the migraine meds and the Zoloft.. 52 days without really sleeping. This is how I felt for years. I looked gray. My joints ached. I felt old.

So while I am still tired and need to take care of myself by eating a little better and getting some good sleep and drinking even just a glass of water during the day, I know that this will all pass. I will be able to help someone else after I get my own mask on.

No More Patience

I'm not sure what has put me over the edge but I have no more patience right now. Could it be the incessant whining of my two year old? My same daughter who will not fall asleep without a tremendous struggle that lasts hours and hours. Perhaps it was a weekend with my house filled with extended family, whom I love very dearly, but when you plan for Friday night and get the whole weekend...

and the babysitter didn't show up again yesterday...miscommunication... I know I know. I am going to get new help when school starts..just two more weeks.

and Jake flipped out (episode time) last night during bath time and came up from the ground full speed and knocked me in the chin knocking my jaw into my friggin' brain. I am stiff and sore this morning from that one. Luckily I didn't get my tongue cut off.

This morning little Miss Lucy happily went to her new daycare and Jake proceeded to whine for several hours. His migraine medicine doesn't seem to be working, although he is a lot calmer now that lunch is over. Just in time for that PhD student to come over and do a verbal test on him. Fantastic!

I am going to drink a diet Rockstar and take a Wellbutrin and hope that I become civilized enough to deal with adults.

Right now it's a good thing that Jake likes to hang out by himself because I am not pleasant company.. but I am feeling just a tad bit better writing it all down.

Evan Kamida (July 30, 2000 – July 24, 2008)

My heart goes out to Vicki Forman and her family. She is a remarkable woman, and her loss is unimaginable.

If you feel moved to do so, in lieu of flowers, please send contributions to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752

or online http://www.vickiforman.com/?p=1011

As the women in my family have often said

"There but for the Grace of God, go I."

Wishing you fortitude Vicki.

Victories

I'll take 'em however I can get 'em

Just went to the grocery store with both of my children. We are all still alive, and it was actually a "real" shopping trip...or at least we filled the cart. I was just telling Squid that while I'm quite certain I paid more than I normally would for some items, I am willing to pay more if it means that I got to take my special needs kid out on an errand that will be a part of his life forever and have it go better than okay. He was happy and jumpy and squealy and smiling. Lucy was begging for ham and bagels. I was able to keep hold of Jake's hand AND get Lucy her raisin bagel. I am calling that success.

I only got one "oh poor you" look, and it was from another mom with a kid in her cart that was "too old" to be there, playing with a small box. Perhaps her look was actually "oh poor you, I have one of those too."

We got help to the car from a young kid who thought Lucy was the most precious kid who ever landed on the planet. And she is precious, but mostly because she finally fell asleep in the car on the way home allowing me to unload the groceries and make dinner for both kids sans drama and "I NEEEEEEEED that Mommy."

Now I just need to get through dinner and bath time.

I can do it.

I can do anything if I can take those two kids to the grocery store.

So Much to Do

and so few hours while Jake is at summer school. Friday is the last day of summer school, so I feel like I have about 15 more hours to get everything I need to get done for the next two weeks. Jake starts school again in mid-August, so it's not like I need to fill in a whole lot of time, but it's just enough to remind me that outings with both of my children are a rather daunting task.

My stomach just quivered at the thought of trying to take Lucy to swim lessons during those two weeks. Jake hate HATES going there. The giant white dome enclosing a steamy pool and screamy children? What's not to like? Last time I seriously left him in the car playing while I stood at the gate of the swim school, one foot straddling the little line in the cement, demarcating the difference between abandoning my 2 year old with her swim instructor, and leaving an unattended child in a vehicle. At least I had the good parking space. I will not even think about getting Jake's aide here by 8:45am so she can watch him while she swims. I may need to put her lessons on hold for two weeks and risk losing the time slot.

These are the things that people can't even imagine about our lives. The lessons are 30 minutes long. Jake yelled and threw himself down in such a large fashion that he terrified several children parents last time. He looked just enough like he was just throwing a temper tantrum (which indeed he was) that I just looked like a bad mom. That's my favorite. 9am and I suck at being a mom. It is such an awesome way to start the day.

This evening Descartes and I have been trying to figure out additional strategies to get Lucy to sleep. It is 10:44 and she is still awake in her room. This is after a full day at childcare with all 3 and 4 year olds. I thought this more rigorous childcare would get her more tired, but it seems that she is saying more and more often "Mommy. I'm not tired." This was the age that my parents bought me a 3 foot long, 1 foot deep drawer filled with Superscope Storyteller books and a cassette player. I have been buying these vintage tapes and books in anticipation of this day, hoping that the stories and the independence of using the tape machine would provide my busy little girl the same thrill it gave me, but I'm not sure. The stories are closer to Grimm Fairy tales than soft and lovey Dora and Barney stories.

My favorites were Little Mermaid and The Selfish Giant. In the first story there is no Ariel singing with the fish, instead there is a beautiful woman who loves the Prince so much that she kisses his new bride gently on the forehead and throws herself into the sea, tossing away the witch's knife she was given to kill the bride. Instead of a life of further sadness turned to seafoam, she becomes a Daughter of the Air.

"We spread the gentle winds of hope. You, poor Little Mermaid have searched for goodness with all your heart. That is why you have become a daughter of the air."

and apparently, the line that has stuck with me:

"For the Little Mermaid had learned that in the giving of one's self, the greatest reward comes in seeing the happiness of others."

Apparently I remember a lot from my second year of life. I guess I'd better make these last days of summer count. So tomorrow there will be tape recorder buying and Jake to the aquarium planning.

Real Exhaustion

I am so tired. Yes my children woke up a hundred bazillion times last night, and I spent every evening for the past week doing something, but really, right now I am exhausted because I am trying to finish A Real Boy by Christina Adams.

It is unbearable.

I knew it would be, but her writing exhausts me. It does not, in any way make me feel hopeful. Her half chapter describing "Autism Mommies" is nearly perverse. It pretty much indicates that your child doesn't have a chance at being "recovered" from autism unless you have a lot of money and the mind of a "professional". Whatever Ms. Adams. I don't buy into the recovery stuff. I don't buy into your evaluation criterion.

I will finish the book before I write any more.

Right now I would rather do the dishes.. how's that for disliking the book?

BlogHer broke Twitter Again

or else the Fail Whale was just feeling lonely.

My Road to BlogHer 08 Friday Night

Friday my day went something like this:

• Get up at 6:00 for shower
• Lament burned out plug in the bathroom.
  
• Get Jake dressed, fed and on bus in a 12 minute time span.
  
• Wonder if I have permanent brain damage from electric shock yesterday from said plug.
• Help sister pack everything and two boys into her car and watch her drive away.
• Entertain Lucy.
• Gather all of the left over parts from bathroom remodel for returns to Home Depot
• Glance at scary unblown hair and wonder how long it is going to take for us to either finish remodel in bathroom #2 or fix plug in bathroom #1.
• Realize that my makeup bag is in my sister's car.
• Call sister.
• Make plans to meet in a parking lot three cities away.
• Put screaming needs-a-nap Lucy in car.
• Drive to other city.
  
• Go through drive through for iced tea and lunch for sleeping Lucy just in case she wakes up hungry.
• Wait in parking lot with starving Lucy. Give myself an internal "High 2" for remembering to have lunch ready (I don't get the full 5 becuase the "lunch" consists of a fried burger, french fries and apple juice).
• Meet my sister, get makeup bag.
• Go to Home Depot parking lot, and realize that I do not have the correct receipt.
• Head home.
• I can't remember all of this part because it is a blur but things like poopy diapers, crying, snacking and dirty dishes happened.
• Empty trash can from the deck.
• Carry trash bag across kitchen and head towards back door.
• Get all the way past the gate and to the outside trash area.
• Realize that trash bag has a hole and is leaking murky liquid.
• Figure out that murky liquid also has maggots in it.
• Retrace steps and find out that there is a maggot trail a la Hansel and Gretel all the way back to the kitchen door.
  
• Remember that maggots are one of the few things I can barely tolerate on the planet. Another one is arrogant people who are boring. Ponder if those two things are the same thing.
• Don gloves, gather papertowels and 409 spray and pray that my two children don't have maggots between their toes.
• Clean it all up. Ugh.
• Sit down at computer to feel better.
• Get IM from Descartes..."Do you want me and the kids to drive you to SF so you can meet up with BlogHer peeps for after party?"
• Nearly cry at my good fortune.
• Search out public transit options.
  
• Scramble to get get changed, fix hair (lament loss of bathroom plug again!) and find two shoes which match.
• Pile children in car and drive to Descartes' office.
• Race to BART train. Make train by two minutes.
• Arrive in San Francisco after cozy BART nap wearing a clean shirt, lipstick and pants.
  
• Find dear friend Squid nearly immediately.
• Drink and laugh and chat and finally get to meet with Blog heroine Kristina Chew.
  
• Dine with Squid and LeftCoastMom and I, Asshole. Laugh a lot.
  
• Get a ride home from the exhausted and responsible driver Squid.
• Fall into bed. Happy. Tired. Happy.
  

Waiting

I seriously waited nearly all day for a PhD student to come to our home to humiliate us
give Jake a language test. We are part of her sleep study, which so far has consisted of Jake fighting with us about putting on something called an actigraph (a watch that measures motion) and me filling out a lot of psychological profile information.

Clearly the woman has no children, and no friends who have kids with autism...or toddlers.

Whatever. Descartes wants me to pull out of the study because she has only been condescending, and then basically rude. I am going to try to stick it out just in case we help even one other family with her research.

By the way, if this is what it takes to get a PhD these days? I should totally do it.

haha

I just got a call from a market research firm, and was asked if I was the oldest person at the house. I was about to say my husband is older, but before I could correct the person, I was told that they would try back later when my parents were home.

I would so love to be the not responsible one at this household right now.

Irony.

Read any Plutarch Lately?

Yeah, Plutarch. Mestrius Plutarchus A.D. 46?-c.120 born in Boetia, near Delphi. (Those are not things I knew 20 minutes ago.)

So I was reading The Art of The Personal Essay an anthology collected by Phillip Lopate, and I decided to read Plutarch's Consolation to His Wife

I was moved. I cried. It is an essay intended for his wife regarding the death of their daughter. It is at once, both a reminder of the decorum one should demonstrate, and a letter of thanks to his wife for already displaying all of the traits he so admires in the face of such a great loss. Among other things, it is also an essay that rejoices in the life of their daughter, rather than the life she could have had. I cried. (italics below mine)

The two years of her life that intervened must by no means be effaced from our memory but rather reckoned as a pleasure, for they afforded us delight and happiness. We must never consider a small good as a large evil, nor be ungrateful for what fortune has given us because it has not filled the measure as full as we expected. Always respectfulness to the divine and a cheerful uncomplaining attitude towards fortune produces fruit that is good and sweet.

I found it both comforting and curious to have my daily battle summarized into one sentence; one sentence written 2000 years ago.

and there is another passage which was particularly poignant about pitying the child for all that she could have grown to be:

If you pity the babe for departing unmarried and childless, again you have the consolation of knowing that you yourself enjoyed a full share of such experiences. It is not fair to set a high value upon these matters for those who lack them and a low for those who have them. She has arrived where there is no distress; there is no need for us to be distressed. Why should we be afflicted with grief on her account when she herself can experience no grief? The loss of treasures loses its sting when they reach a state to which the sting is no longer appropriate. It was only of little things that your Timoxena was deprived, for all she knew was little things, and in little things she took her pleasure. How can we say that she was deprived of things of which she had no knowledge, no experience, no desire?

I do not exactly mean to compare having a child with special needs to losing a child to an early death, the passage merely spoke to me in that I quite often find that the pain I endure is much more about the loss that I perceive...and those are things of which Jake knows very little. It is my pain, not his.


"And so..." That's what my mom would say. And so, I am going to read a little Michel de Montaigne and go to bed.

Giving Up. Admitting Can't do Everything Myself.

I have hired two guys to help me finish remodel my downstairs bathroom. I have purchased all of the materials already, but after this many months I have decided that I actually cannot hang drywall/cement board, solder in a new pressure valve shower handle and still have two kids who want to play in the kiddie pool. That's not true. I could do it. I could. but since I haven't in all of these months I am guessing I should just give in on this one. Same thing happened in the backyard. I get very frustrated when I must pay people to do things I know I can do myself, but I think I was being unreasonable on this one. Maybe if Lucy was 5? Maybe if Descartes didn't have a more than full-time job?

Anywhooo. It will cost some money, but not that much and I may have a bathroom within a few weeks instead of months.

And the rear bumper is back on my car after I left it at the shop yesterday to be repaired...after I backed into our LandCruiser, after Jake was late to catch the short bus..which not surprisingly we missed.

apologies to those of you in Pocatello and Flagstaff who probably heard me yell ffffuuuuCCCCKKKKKKKK! After Descartes let me know that I should stop gunning the motor because I was not pushing a trashcan out of the way I was trying to move a 2 ton truck with the right rear bumper of my Not-so-Mini van.

Uhm yeah. But it is all better now. They were able to pop off the bumper, warm it up and smooth it out. The paint just looks a little scratched.

Hmmm some things do go right sometimes...hmmm

I am going to fold some laundry while I can still see straight. I am so tired. I think it was the last three 3x5 Cement boards which weigh I don't know how much each, but loading them up at the lumber yard and then into the van.... just so tired.



**************************

as it turns out...did not go to bed... over an hour later I am still in the kitchen because I forgot I was cooking wild plum lemon spread in a vat on the stove. Ugh. Now the kitchen smells a little like burned sugar. It has not st up so I will need to put it on to cook more tomorrow when i am more awake and less likely to burn contents and/or put the pot out into the back yard and say "forget it."

Time flies...

when you are having as much fun as we've been having. We went to Tahoe last Wednesday night and I am so glad we left for the holiday weekend early. I had Jake's aide at the house keeping the kids busy while we packed the car, Descartes still worked a full day and it only took us 4 hours to get there so we still had an evening with grown ups once we got there.

We went to the beach on the third. Baldwin beach, where we baptized little Lucy (that seems like a hundred years ago...). It was so great to have Jake be happy, happy and comfortable in/near the water and in the sand (since sorting earth has been a recent favorite past time of his). He waded into the lake, smiled a lot and didn't steal any toys from small children (once we gave him his own shovel). Lucy was very excited, and I am proud to say that as much as she really likes her Sugar Plum Fairy ballet costume, she was even more eager to chase the minnows in the lakeside stream. "It tickles!" she exclaimed loudly enough for the minnow to swim away.

It is a personal goal of mine to raise a daughter who is just as comfortable in hiking boots as she is in high heels. I am also hoping she can easily tie a tippet to the leader, tie a bow tie and tie an apron. Somehow right? She can choose who she wants to be, but I want her to learn all the parts so she can know what she is and isn't choosing. Does that make sense? Anywhoo. I was thrilled then when the a couple of days later, Lucy stood there in a little dress calling for me to check out the biggest ant she'd ever seen. That's my girl. No Lucy leave the ant alone he doesn't need to be on your finger...

It was tiring at the beach, the sun, the altitude, ensuring that one of us was with each kid at all times. They can't really be managed by one person right now. Not with water and parking lots and other families. Descartes was able to give Jake some physical space and let him get about 3 yards away. I let him get to about 5 yards at one point. It's hard to give him the space and independence he so desires without putting us too far back should he need us, quickly as he sometimes does. We're trying, and I know he had a really good time. Of course we should have left 5 minutes earlier, which would have been just a few minutes after I said to Descartes, "We should go, it's probably about time for Jake to poop, and I don't want to deal with the swim diaper." Ah. If I could only listen sometimes...perhaps that will be a gift I receive in my 40s. That part of the day sucked with a capital SUCK, but I carry wipes and nitrile gloves and baggies and extra pull ups and clothes and a loving husband who is willing to grab any one of those things, or hold a struggling kid even when I use my highly-directive voice. It worked out just fine.

We went for a bike ride on the Fourth of July. It was pretty much a perfect day. We moved much faster than vehicular traffic that's for darn sure, and the kids had a giggly, napping sort of time. We rented trailers and bikes because we had been too tired to bring our own, but, as it turns out our bike trailer for Jake is actually a lot taller, longer and perfect for him. His head stuck out the rented trailer so he had no sun shade, and with a flick of his foot his toes could just reach Descartes' back tire. Let me tell you how (not) awesome it is to watch your hypotonic child throw his foot over the edge of the bike trailer, have his gigantor size 4 shoe get caught under the bar and have his ankle roll around until his foot popped back out. I was riding behind the boys, with Lucy in my trailer, and I was fairly certain that not only was I going to watch my son's foot fly off, but I was possibly going to run it over, thereby making my life truly a horror story. With fairly constant "reminders" Jake stayed inside the trailer doing wacky things like nearly lying on his back with his feet at the top,tapping his feet on the bar that attaches the trailer to the bike, and occasionally flipping his $60.00 shoes off. The good news is that the ice cream at Camp Rich was cheap. $2.50 for a huge HUGE kid's scoop, and that pretty made much made us forget that it was really scary. We will probably do it again.

Saturday we went to the South Lake Tahoe rec center park which is all gated-in HURRAH! I am so happy that people have figured out that parents feel safe when their kids can't run into the parking lot. It has a terrific play structure and swings and a volleyball court, and picnic tables. Lucy went on the big kid swing for the first time; all by herself with no back-up. I teared-up of course. She never really was a baby, but she is just catapulting past the milestones.

Jake spent a lot of time watching everything, sifting through the bark and sand. It is so hard sometimes to help him engage. I took him up on the play structure (something he does on his own at school)but he got panicky before I could help him on the slide. Perhaps he does have some depth perception issues? He did sit really happily cuddled against me on a park bench for a while. That was crazy. It is so uncommon for Jake to sit and cuddle that Jaster and Demanda stayed back, afraid to interrupt the mood. It made me feel very close to him at just the right moment. I have been missing him lately, all the while spending more time than I normally do with him. How is it possible for me to understand him so intimately, guess so many of his needs, and feel so distant from him.
note to self: I need to make a list of the things I know make Jake happy, things we can do together since it is all too easy to let him go off on his own, scattering pebbles and sifting the bark out of my flower beds.

We had such a nice weekend it was hard to leave, but managed to get it together and head home early Saturday evening. Once again we skipped most of the traffic. Lucy was so tired she whined a lot of the way. Jake just smirked in her direction.

No Use Crying...Right?

from before the Holiday weekend:

I know there's no use crying over spilt milk.. but is there a caveat for spilled chocolate milk, a full 9 oz of it, streaming across the counter and onto the recently mopped and swept only 5 minutes ago floor? DO you think there is use in crying over that? probably not i s'pose.

What about the aide for Jake who just yesterday was so awesome, and on time and great with Jake and Lucy too, and cleaned the counters and the trash heap we had piling up next to the recycling...what about how she sent me a text at 12:49 letting me know she can't make it at 1:00pm. I hate looking for new help.

The last time I posted an ad for an aide on Craigslist I got people making horrible rude remarks about my post because I referred to my then 5 1/2 year old son as "my darling crazy monkey boy". I created a list of criteria which was honest (wiping buts and noses), and apparently I did not volunteer to pay 20 bucks an hour for a babysitter. Three years ago I was offering $10.00 cash. I know it's not a lot, but we always pay for the hours we book, even if we don't use them, and I didn't want a therapist. You didn't need a MA in Economic theory. I was also quite clear that they would need to have a sense of friggin' humor because that was the only way we were making it through our life with a special needs child. Here's one response I got:

Is it just me...or is this woman totally spun? Did anyone read her posting? I mean I realize everyone is different but talk about strange....Actually aside from her bizarre wording and "humour" in her posting, I think the humour truly is what she is offering in terms of salary. That little per hour for all of these expectations and demands for a special needs child???!!! This lady truly has lost her marbles. I feel sorry for this child....

That was not even the most cruel. I deleted those because they were too painful. This was the nicest response I got back:

Wouldn't it be great if every family with a special needs child had a big fat income and could afford to pay top dollar...

There are jobs posted on craigslist that ask for a master's degree and want to pay $12 to $15 an hour. Where is the whining about that?

Reality is this family is probably not making enough money to pay somebody $18 per hour. Heck, even the job ads I have read for social service type agencies don't pay that high to work with special needs children.

Seneca wants a BA degree for a classroom counselor and is willing to pay a whopping $12 an hour...

or check this ad out:
Milieu Therapist III: MA or MS degree in a behavioral science subject (child development, psychology, counseling and guidance, early childhood education, human services, nursing, social science, social welfare, social work, sociology) or a BA or BS degree from an accredited college or university with a major in a behavioral science AND four (4) years mental health experience. MTIII: $13.95 + Benefits

So hm. $10 an hour,probably cash, tax free money actually works out to more than someone who is required to have a MS or 4 years solid experience working with special needs and they don't even get to make fun trips to the ice cream shop!

I think there are a few people on here who think that if they respond to ads saying that rates are really higher than what is being asked for, then they will somehow force higher rates.

Sorry.

Elementary economics will dictate -- supply and demand.

Supply of child care type people is far far far outweighing the demand in the bay area. Just look at the craigslist ads. Tons of people scrambling for a few jobs.

You want higher wages for babysitting/nanny work? Eliminate about 70% of the people trying to get these jobs, or create a whole bunch of families that will need the services.

That will inflate the wages.

If the job ad doesn't suit you, then move on to ads that have a higher dollar pay and good luck getting and keeping them.

Also, it is PAINFULLY obvious that the mother has not lost her sense of humor in dealing with life. She clearly loves her "little man" or "monkey boy" and who the hell are any of you to judge the nicknames? Maybe this little boy named himself monkey boy after curious george or who knows what book or story.

You'd all do to lighten up a bit. Her sense of humour was obvious throughout the ad, and spelled out at the end in plain English.

Live and let live, little man monkey boy probably feels as loved or more loved than most kids in America.

Rock on Monkey Boy's Mamma. Don't let them mess with you. Congrats on the new baby.

So we'll see. I am so overwhelmed by the daunting task of learning to trust someone that it makes me want to throw up. Here's another thank you to my husband for working more than full-time to ensure that I don't have to entrust Jake and Lucy's entire development to someone else. What the hell do other parents of special needs kids do when their provider flakes and both parents work? I think this alone keeps me from ever having a job with set hours ever again. Ugh.