29 September, 2009

A note from Jake's Teacher

"He walked around the school and played soccer (kicking the ball towards the goal). He had a good day. He ate yogurt with the spoon, a little messy, but he ate independently."

So I am calling that a good note home. Jake has been so happy, and calm when he comes home. Tired I'm sure, but a happier child in general. We've been able to walk him down to the van in the morning (we do this as a family with Lucy still in her pajamas most days...we look pretty darn hilarious.) and walk him back up at the end of the day. He has walked nicely to Lucy's class to pick her up after school, playing on the kiddie carpet while we pack up her things each day.

Lucy is thriving at school. Wednesdays we've added soccer, which she love *loves*. She is just growing up so quickly.. how cliche is that? We just finished watching The Wizard of Oz with her. She really enjoyed it, and when I told her I didn't like the flying monkeys when I was younger she reminded me that a) she is very brave, and b) it is just television. It was a great experience to sit on the couch with Descartes and Lucy and eat popcorn and watch a movie like that. Perhaps this next year will provide an opportunity for Jake to do something similar. He is much better in theaters than Lucy, but it would be so lovely to snuggle as a family.

Jake turns 9 on Thursday. Nine Years Old. Wow. Finding a gift for him has always been difficult, or at least it's been hard since he officially left the baby years. This year I think we've decided that we want to get him this bike trailer by Wike. We have the smaller version which he can cram himself into, but it really can't be comfortable for him. He loves to go on bike rides, but I don't see him having that physical capability for awhile, if ever. That is just a lot of coordination. One set of grandparents offered to send him to Winter respite camp, but I am so ticked off at that camp that I really don't want to participate in their shenanigans until they get it together (or at least until I break down and try to get Jake into Summer camp.) I am sick SICK about it.

Actually, it's sort of my "perfect storm" time of year. With school starting and crazy weather and that unfinished summer to-do list. It's always hard for me. I definitely have more optimism and a stronger sense that we are on the right track with Jake, but birthdays are milestones none the less, and I cannot help but note where we are, where we're going and what the road looks like these days. And while I had great intentions, time crept up again, and Jake currently has no birthday party planned, and on his actual birthday I won't be with him. My parents are coming into town on Thursday so we will get together with Descartes' parents to celebrate Jake this weekend. This means sometime between now and Saturday at noon I need to make cupcakes for Jake's class (for Thursday) and a chocolate cake for the family celebration. Lucy has suggested a Thomas the Train cake. Right now we are looking at Duncan Hines.

Despite sounding cranky and awful, I really am feeling happy and hopeful. I'm guessing this time next week I won't remember any of this current anxiety.

25 September, 2009

50's day for Lucy

I did it.. I made something someone could wear! I can officially cross it off my 40 by 40 list I cannot believe I actually accomplished something....from beginning to end. It's been awhile. My sister, Demanda, was here last weekend and encouraged me through the project. She also made a pretty little underskirt with tulle for the skirt, which Lucy found itchy and took off before we left the house.

Descartes' parents are on their way to our house so I can take them to 50's day at Lucy's school, then we will come home, I will race around like a mad woman packing, and we'll drive to Tahoe!

Thanks to Jaster and Demanda for being our weekend getaway.

I think things are coming together a bit for me..or at least nothing is completely coming apart at the seams right now.

23 September, 2009

With a Rebel Yell!

This was the hair Jake had this morning.. completely untouched. Last night I took some medicine that made me pass out until about 4am, so it *is* possible that he went clubbing while the rest of the family slept.

We had Jake's IEP yesterday. It was so fantastic to hear things like, "He has so much receptive language. We really need to focus on how he can better communicate his needs to us." They've also noticed Jake's sense of humor. And you know what else? He's not getting away with his "I drop on the floor to get what I want" bit. We have a behavioral plan in place.
The schoool district has been wonderful, and broght the software that had been ordered for Jake last year. The system is called Intellitools and I have no idea how to use it, but I am going to work on it this week at home and then teach his teachers and the SLP at school.

16 September, 2009

Notes About Jake

These are the notes I gave Wonderskool when Jake began school. I just got a copy of proposed goals from the teacher this afternoon, and we will be working on them together tomorrow morning. I got teary when I read her goals for Jake. It is so very clear that they see him, really *see* him.

The teacher wanted a cheat sheet on Jake so they could know a bit more about him before they met him in class, so here is what I sent:


Jake is considered non-verbal, but speaks on occasion. When he does it is relevant, important, clear, and often funny. He has also spoken in Spanish.

He has sworn in frustration and noticed the rainy weather by saying “agua”. He has made commentary about a bad presentation “That’s stupid.” and expressed affection by saying “love”. He will say “uh-huh” and “no” at least once a day in response to something, and we have heard him say “Mom” more often in recent months. He signs “more” by using his left hand and tapping it against his side. He does not use any other typical signs.

He will often squint or twitch his eyes closed for a yes response, and when he is happy it is very clear by his utterances.


Jake comes with a diagnosis of CP, ataxia which basically means he sometimes looks like he walks like a drunk. When he is more tired his physical disability becomes more pronounced. When he was younger much attention was focused on his physical disability rather than any behavioral or academic issues because we all so desperately wanted him to walk, which he did just after his second birthday. He walked completely independently within that next year, and has slowly mastered many typical milestones: stairs, walking over objects, climbing on top of things (but not ladders) and just recently jumping rather than walking off of a low height.

Jake has low tone, and quite often his slouching and putting a foot up on his chair looks like a behavioral issue, when he is really trying to get more support for his trunk. He will cross mid-line, and uses his right hand almost exclusively, but has very poor bi-lateral coordination and so cannot pedal his tricycle. He has not mastered pincer grasp, but uses it on occasion, and he does not use both hands to carry objects, choosing to rely on his right hand against the item and his body instead.

In the last six months he has finally handed me an object when verbally prompted, and was able to use this skill again with another adult.


While it can be difficult to assess Jake, we believe he knows his colors, letters and numbers. When completing discrete trial learning so we could get a base line for each color and number he became increasingly bored and non-compliant, so we went back to asking him to choose from a field of four and he has at least 80% accuracy. Of course if you ask him for the red crayon he may take all of the crayons and leave behind the red one, rather than ever hand you the red one himself

He regularly uses icons, and a four-talker output device. He has just moved to an eight-window device.

He does not like hand-over-hand in general, but this often has to do with how much he likes his aide. Because his grip strength is variable, and his fine motor skills are so poor, he does not hold a writing instrument “properly”, or use scissors.

Two years ago he could not get his hand into a bucket a foot across, and he can now get his hand in and out of a pretzel bag without knocking it off the counter.


Jake will help with dressing by putting his head through and placing his arms and legs into the proper parts of the clothing. He cannot pull off his own pants on a regular basis, but when a pair of pants was bothering him recently (tag issues) he was able to remove the pants by himself (but since we did not see him do it, we are just guessing that he used his feet to step on the legs and pull them off).

Jake is not toilet trained, but knows when he is wet/soiled and will often come to us to be changed. He will not eat wearing a wet/soiled diaper, and is showing an increased need for privacy by closing the door after we enter the bathroom. He is probably ready for a timed-void regimen.

Jake does not mind having his hands washed, but he does not ever liked to be held down so washing one hand at a time is the most successful model.

He has a high tolerance for pain, cold and heat, so we make these choices for him. When Jake is in physical pain due to injury he becomes silent and breathes haltingly. He was able to walk around our backyard with a three-inch nail all the way through his foot barely limping. He is constantly covered in bruises, and scratches.


In addition to typical Autism symptoms, CP ataxia and global developmental delay, Jake also suffers from two other issues.


In the past: 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. Jack 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.


In the past: 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; Jack’s hand must be held AT ALL TIMES or he will run away.


Jake will greet people by grazing them with his hand, or by looking at them with a sideways glance. He has recently shown much more intimacy with his grandparents, nudging them to hold hands, and leaning in for hugs. If you ask him for a kiss or hug he will lean in if he wants to have it happen, or lean back if he does not. He recognizes familiar people and places, and develops strong attachments to his caretakers. He is a physical child, but won’t hold still for long. He loves to wrestle and be tickled.

He is gentle with his younger sister, and cautious in general around small children. He smirks when his sister cries to try to get what she wants, or for an unnecessary reason, but is quiet and attentive if someone is hurt.

He enjoys visits to Tahoe to visit his cousins, and likes to watch other kids his age engage in typical behavior. He is not violent towards others, except to flail in an attempt to disengage from the activity if he is in distress.

He will wait until another child abandons a toy before seeking it, but will circle around it while the other child is playing with the toy. He has hidden toys before to make sure no one else gets them (or at least it appears that way.)

When people treat Jake with respect, he normally proves himself to be a sweet boy who enjoys interaction with adults and children. When his caretaker, or those around him are unsure or disrespectful (speaking unkindly about him) he is uncomfortable and will not be persuaded to demonstrate very many abilities.

Becoming a Citizen

Lucy began reciting the following in the car yesterday when I picked her up from school:

I pledge allegiance to the flag
of the United States of America,

and to the reflection
in middle of sand,

one nidgeck, under God,
with liverteep
and justa leap frog

10 September, 2009

Starting to Breathe

So I had a massive migraine today, and it occurred to me that perhaps my body doesn't understand this new feeling of stability and is going into some sort of hyper drive, creating its own sh*t to try its best to stay unhappy.. because nearly everything is going really, really REALLY well. After a rough afternoon, I am now feeling much better and managed to get finish some paperwork and put together a little board meeting...and heck I'm even writing, which has not been happening very often lately.

The scoop:
Jake **loves** his new school. He runs upstairs for breakfast. He waits at the back door every morning when he is done eating. He is cooperative on the street when we put his bus harness on, and once he is zipped he turns around and gets into the school van and goes back to sit in his seat with very little prompting.

School highlights:
  • Jake said "rectangle" on Thursday, and "thirs..." for thirsty on Friday.
  • He walked around the campus and when he got tired, instead of dropping to the ground in protest, he got into the wheelchair he was pushing
  • He is allowing hand-over-hand help to do ART, and other fine motor like using scissors.
  • When someone tries to interrupt his schedule he taps his schedule book to remind them of where he is supposed to be.
  • He participates in every school activity including yoga, music and P.E.
Home highlights:
  • Jake comes home happy...everyday...
  • We took a road trip to Southern California, and stayed with my parents instead of a hotel. Jake did very well almost the entire time while we were at the house, and only had one (albeit large) incident at a restaurant.
  • Lucy and Jake have been interacting in very sweet ways wrestling and even snuggling in bed with mom and dad.
  • Jake has been awesome visiting Lucy's new school, which he must do just about every day since his bus arrives at the exact time her school lets out. He has been calm, relaxed in a room of three year olds and has not for even once instant given me any trouble walking to and from the car (the entire school is built into a hill.)
Lucy is loving her new school. She took off the first day, went to the opposite side of the room from me and began to play. She turned to the girl next to her and said, "My name is Lucy. I'm going to play babies. Would you like to play babies with me?"

So far she wants to go to school every day "except not on Saturday", and she cannot remember any one's name. She is friends with "the girl with the blue bow", and "the boy in the red shirt." We've met lots of nice parents, and Lucy has apparently been lovely every day. Her teacher Ms. Rudy has even gone so far as to say that Lucy was "always"polite. She does not want to leave school, and it has taken at least 20 minutes each day to convince her to leave with me.

I still have much to do to feel successful at this Special Ed PTA thing this year. I didn't realize that I would actually feel any additional pressure when I changed roles, but apparently Sage did even more than I knew...and here I thought we did it all at Peet's Coffee on Tuesday mornings. We have a pretty good plan in place, but we need to add new member to our ranks so none of these amazing core people get too burned out.

And the house may regain some badly needed order after 3+ years of crazy Lucy and pregnancy before that. All of the clothes in our house are currently clean and folded except what we wore today and what we have on right now. Of course someone helped me get it to this point, but I have decided I am going to need someone to help for a few more big projects.. it didn't get this crazy around here over night, so I am realistic about how long it will take, but little by little, my hope is to cut the amount of stuff in our house by 1/3 by next summer.

Then I will really have space to breathe.

Going to bed now...smiling.

04 September, 2009


I did at least one good thing today
Save The Words Certificate

Save The Words
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