22 April, 2009

Quick Notes

  • Lucy up all night long. Benedryl dose at 3am (she said she was itchy) this led to sleep to the munchies. She asked for Cheetos and salami. Because we are a registered Level A white-trash family, we had both. 
  • Bee swarm at the back door. Generalization alert: Children with autism think bee swarms are amusing, and are not disturbed by the site of 2 gazillion bees trying to get into the house.
  • Sister and boys coming: Thursday-Tuesday. Bee examination and extermination relocation: Tuesday-Thursday. Cleaning for soon-to-be-arriving guests Never-Not happening.
  • Dad also coming Thursday-Sunday. Number of beds in house: 4 Number of couch beds: 1 Number of people? 8 Number of people who like sleeping alone: at least 6.
  • Planning Holidaze 2009 already. Yes, really. Where are you spending Christmas/Chanukkah/Kwanza/Winter Solstice?
  • Temperatures low of: 74 last night.  High of: Hell +4 degrees
and in the write-it-down-lest-I-forget-I-laughed department:

Best compliment I've heard lately (slightly paraphrased during my fuzzy recall): 
"She looks like the type of woman who could kick your ass, then entertain you on a pole. I totally trust her with my kids."
This was *not* said about me.

20 April, 2009

Asking for Respite

Here's a sampling of what I just turned in.

**************************
In addition to typical Autism symptoms, CP Ataxia and Global Developmental delay, Jake also suffers from two major health issues.

“Episodes”
Previous: Pain from unknown source for 9-11 days every 5-6 weeks “episodes” resulting in near loss of sleep, severe agitation, self-injurious behavior and complete non-compliance. Jake also suffered from panic attacks which could blow up into major tantrum/agitation.

Current: Pain has been partially attributed to migraines. Episodes continue to come every 5-6 weeks, duration has been decreased to 5-6 days. Severity seems to have diminished slightly. Reduction in symptoms can be attributed to better use of psychotropic drugs (Zoloft, Valium), better communication between home and school (to identify early symptoms) and use of Maxalt, an anti-migraine drug. Panic attacks have decreased dramatically.
Jake still has severe agitation during episodes which have, in the last six months resulted in injury to both Jake and his caretakers (Aide, Mom and Dad).

Desired Future Outcome:
  • Continue to decrease intensity and duration of episodes.
  • Increase Jake’s communication skills using icons and “talkers” so he can tell us when he is beginning to feel symptoms. The sooner we get the migraine medicine into him the more likely we are to reduce the severity of the episode.
  • Continue use of Zoloft to discourage anxiety and panic attacks. 
  • Continue use of Valium when Jake’s agitation peaks to avoid injury.
  • Continue to use communication book back an forth to school to provide consistent care for Jake. Teacher also phones and texts when she is concerned that he is entering an episode so I can drive to school and administer medicine.
ADHD
Previous: Inability to sit still in school, unable to calm down for dinner at home. Complete inability to eat in public, difficulty being calm enough to safely be a part of the community. Escaping, physical non-compliance led to (mild but constant) injury of both parents. Use of Adderall was ineffective after 6 months, adding late afternoon short-acting Ritalin had mild success.

Current: Jake now takes 18 milligrams of Concerta which lasts through most of the day without the side-effect of aggression or tears as the medicine wears off. Evening (6-8pm) is still difficult because the medicine is out of his system, but his behavior is more manageable and not as dangerous to himself or others. Camping, hiking or other outdoor activities (including a grocery store parking lot!) which are not safely guarded continue to be a problem; Jake’s hand must be held AT ALL TIMES or he will run away.

Desired Future Outcome:
Continue use of Concerta so Jake is better able to acquire skills at school, and be included more often in after-school, dinner time and evening family and community events.


Use of Respite:

  • grocery shopping
  • dental and medical visits for mom and other child
  • sleep
  • physical therapy
  • laundry
  • gym
  • therapeutic massage
  • date night
  • PTA meetings
  • educational lectures
  • activities for other child (swimming lessons, ballet, art class since Jake is unable to wait during ½ hour classes)
  • sleep
  • coffee with friends
  • car repair
  • banking
  • post office
  • IEP/school meetings
  • library
  • watching mindless television/reading
  • being on the other floor of my house
  • miscellaneous errands


07 April, 2009

I Can't Hear You My Hair is too Loud!

So I uhm, changed my hair color. It's been several colors in the last few days actually, but this is about where it is. It's not as fantastic as Gwen Stefani, but I don't think I'll ever have that much hair again, no matter how much Rogaine my mother mails to me. And it is not as cool as the cute as a button Reese Witherspoon as Ginormica , but it will do for now.

Along with my haircolor, I have changed my attitude. I have just decided. (And in my head I can only hear Michael Card, sung by Amy Grant, from my Christian rock phase " I have decided" Which, by the way,  is a fun song to sing really loud in the car)

WoolfCamp at Grace's this past weekend, gave me a little perspective into another part of myself. It was a fantastic breath of fresh air.  Squid and I led a session on self-publishing and then in BarCamp style I attended other sessions with interesting people and discussion around Sarah's big adventure Genderfork, and the incomparable Susie Bright. I met new, interesting people, and had lots of neat discussions.

On the way home (thanks for driving Squid), Squid said, "I hope you feel like you've been kicking-ass lately. You are helping a lot of people." Which I still sort of squirm about, but I just need to get over it and say something more accepting than what I said, "I feel like I'm on the right path." Wow, I can barely convince myself with that statement, and I actually know everything that's going on in my head. And so, I have decided. I have decided to really try thinking believing that I am kicking ass; believe I am helping people.

So I have new hair (which is not a permanent change don't worry honey), and I have a new attitude.

and with that I am going to start my taxes. Lord. Help. Me.

04 April, 2009

At WoolfCamp!

Okay I am at the coolest house ever. Room is filled with neat people.

03 April, 2009

WoolfCamp

Going A-WAY tomorrow morning with Squid to WoolfCamp. I've never been, but have heard great things, and know a few of the great people who will be in attendance.
It should be a fantastic break from my current reality. It is the weekend between Jake's two weeks of spring break.. and it finally looks like my family is on the mend.

02 April, 2009

Extra Mommies

Mom?
Yes.
Who is Aunt Demanda's Mom?
Nonie
Who is your mom?
Nonie
But who is YOUR mom?
Grandma
But who is Aunt Demanda's mom?
Nonie.
Then who is Aunt Pinky's mom?
You don't know her yet.

Okay

01 April, 2009

Sickness, Spring Break, Toilet Training, and Birthdays

I took Jake to the doctor today and confirmed that yes, he has a major sinus infection. Poor boy. He's been sick since March third. Hopefully we will wipe it out this time. It probably doesn't help his sinuses that the Peninsula has been in full blossom mode, from the beautiful tulips in my front yard (insert picture here when I manage to finally have a moment to take a damn picture of friggin' flowers before all of the petals fall off and I am left with scraggly remnants of faded spring.)to the wild mustard and various other grasses which have let loose their allergens. My house has been a sneeze fest. Descartes is really sick too, but at least he doesn't have strep.. he was tested this morning.

Jake is on spring break for two weeks, so it is at least good that I don't have the daily debate of whether I should send him to school. We will be in Tahoe for Easter, but don't really have other plans. I'm sure there are other families that go somewhere on spring break, and someday I hope that's us, but for now we are cleaning up the backyard and will make a few trips to Johnny Rockets, maybe a visit to the Cal Academy and another trip to the beach.

In other news, Lucy is pretty much potty trained (finally!). She is still figuring out that holding your groin and crossing your legs indicates to nearly everyone else that you do need to go to the bathroom. She started this process officially two weekends ago when we had a wonderful day trip up to the North Bay. We had an amazing day. We were driving through Occidental when something just flicked on in her head and she said she needed to stop and go potty. We went in to a cafe where there was an antechamber where people squished together waiting for the unisex bathroom. We waited behind a precious French girl and her Momma, chatting away, oblivious that we understood what they were saying until I said "Oui" when the little girl asked "Elle fait besoin d'aller à la WC?" or something like that. The mom smiled a nice smile not one of those how dare you overhear-our-conversation-even-though-we were-talking-about-you-and-to-you-in-another-language looks. ANywhooo.. Lucy went "peepee in the pot-ty pee pee in the pot-tee" (that's a little song now) and as she was exiting the restroom she said in a somewhat loud and certainly enthusiastic voice "I went pee in the toy-wlet!" The entire little room (which was now packed!) clapped or cheered or told her congratulations, including a young man who was probably 17-19, and so would normally not care at all about something so juvenile. He said "Great job! Congratulations!" Now that was precious.

Okay and precious.. do you want to know precious? Lucy was seriously the sweetest darling at the little birthday party we went to last Saturday. I know it should be no big deal that she went to some little 3 year old's party, but this little girl Sadie is Lucy's first friend that I had nothing to do with. Yes, I chose the day care, but Lucy made the friend. This is not a younger sister of a special needs sibling who went to early intervention with Jake, or the youngest of my best friend, or the much older kid whose mom I love, or her cousin... Sadie is Lucy's friend. Actually Sadie and Lucy are the best of friends.. frick and frack. they even look alike. So Lucy was invited to Sadie's "Puppy Party".
It was a very sweet party. Lucy doesn't have her hat on in that picture, but there were little hats with ears, and oh were they cute. This last photo is Lucy when there was some free play time, which, by the way, was awesome, the whole party was just fun and relaxed. Lucy went inside the house and asked another mommy to help her put on this lovely outfit... clearly she's my daughter.
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