Taking the Scenic Route

Thursday May 31, 2007

31st May 2007

Thursday May 31, 2007

See how sweet they are, and why Zane’s chair looks like it has been through a tornado.

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And yet, Zora still seems to want his chair

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Grandma came by earlier this week so Zach and I could go see the Pirates of the Caribbean movie. 

The kids didn’t seem to miss us for some reason.

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ah…how cute is that…they are working together.

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…and, here come reality…

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Zora sees a way she can “help”.  She dragged the trash bag halfway across the room, grunting the whole way.

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31st May 2007

Thursday May 31, 2007

Flipping through some old photos

Zane’s First Bath

x2001-12-31 039 First Bath

We have come a long way.  lol

 

 

May 2003. Zane at Zora’s Age

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x2003-05-14 015 Exploration Place.jpg

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x2003-05-16 002 Mega blocks with daddy.jpg

x2003-05-22 007 Swinging with Daddy.jpg

 

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31st May 2007

Thursday May 31, 2007

I have a cold.  A really miserable, nose is red, drippy, coughing, sneezing, itchy eyes, stuffed up ears cold.  It stinks.  I can’t sleep because I start sounding like I am going to hack up a lung when I lay down.  I hate this.

I discovered yesterday at the Autism blastball baseball game that I am being screwed a bit more by the school than I realized and got some advice on how to handle it.  I have calls in to the Developmental Disability office, the ARC that is running a day camp this summer (supposed to be for 6-21 year olds, but the person is checking to see if there is some availability since he has been in preschool and is used to the school environment…not every week is open, but maybe there is at least something there), and the Autism Coordinator for the school district.  The last person, in particular, is pretty powerful, so I hope I am able to get more accomplished.  The DD office is so I can find out if the paperwork has been processed to the point that I can get a case manager which will help me navigate the school stuff better and give me an advocate to bring with me to the IEP meetings who knows the laws.  Hopefully I can get this accomplished without a lawyer because I don’t want the school to be on the defensive, I just want to get what he needs and get a team to work together for him instead of tag teaming me with paperwork crap.

I am hoping to find something for him this summer.  It is pretty clear that he is not handling no school at all very well.  It will help when the social skills class starts up, but I am not sure it will be enough.  He seems almost depressed. 

I also pulled him off of the Zyrtec.  (with the doctor’s approval) because we started having some really bizarre behaviors and I suspect he was hallucinating or something like it because he was all of a sudden scared of his room and kept saying “shoes” over and over when I asked what was wrong.  He was waking up in the middle of the night totally wigged out and unable to go back to sleep and saying somebody was in his room.  He also keeps disappearing and we search the place to find him in the back of the closet, wedged between stuff and not wanting to come out of the closet.  It is sort of freaking us out.  I am not quite sure what to think, but the Zyrtec isn’t helping with his allergies and the behaviors started about the time we were supposed to see improvement of his allergy symptoms. 

So, now we aren’t sure what to do.  I am a little gun shy of giving him ANYTHING right now because his body chemistry is obviously a bit different than typical.  The side effects were worst than the allergy symptoms.

And, the depressing part…tomorrow is Zach’s last paycheck and we don’t know where the next one is coming from, so it is a little stressful.

edited to add an update:

The Autism Coordinator for the district called me back and seemed a bit appalled at some of the roadblocks I have been running into.  She gave me the name and phone number of the Special Ed Coordinator for my school and when he should be available.  There isn’t a way to get him into summer school with the district at this point, but it sounds like I may not have to go through all the evaluations that the people were telling me I had to go through since he has recent evals from all of his therapies and the preschool.  They might have to do some, but it shouldn’t be nearly as intensive as they were leading me to believe.  She also had some suggestions for where I could go to see if they had summer programs available.  She was both helpful and nice, so I finally can say I have had at least ONE person from the district who isn’t a big ‘ole jerk.

Zach FINALLY got the people at the school to give him a password to the job website for summer internships and such.  They kept trying to tell him he couldn’t have it because he graduated.  Ugh.  Well, he did graduate with his Bachelors, but he had access to the service post undergrad degree, so it shouldn’t have been such a royal mess.  At least he has a larger job bank to look through now because he isn’t getting very far with the placement agencies in town so far, and there haven’t been any callbacks on the direct resumes yet either.  Frustrating.

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28th May 2007

Monday May 28, 2007

She got her chair from Papo and Grammie.  Now she can leave Zane’s alone.

Last night before we took her to bed she was playing peek-a-boo, looking over the back of the chair with an impish little grin and giggle.  I have to just hold that memory in my head because it would have broken the magic to grab the camera just then.

Here she is enjoying the chair

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Helping Dad with dishes.  She was told right before this picture to leave the dirty dishes alone as he is loading the dishwasher.  You can almost see the thought bubble over her head trying to decide whether or not to grab the spoon. 

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And his head is turned and temptation is just too much

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The next picture, had it turned out, was the blur of her running towards me, hands up, crying a desperate cry because Daddy caught her and told her to put the spoon back.

 

This afternoon while I was doing laundry, my little helper suddenly disappeared, so I peeked my head around the corner and saw this.

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edited to add:

I noticed the tickers of their ages -

Big brother Zane
5 years 5 months 1 days

Little sister Zora
1 years 5 months 5 days

cool!

 

 

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27th May 2007

Sunday May 27, 2007

We had a potluck BBQ with friends.

When they left, Zane tried to go with them.  lol.  It was the first time I have seen him truly enjoying other people being here (except for Grandparents).  They played all over the house and Zane didn’t retreat to his room once that Zach and I saw.  Zora had fun too.

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Look what we found in the bush next to our front door!  I think it some sparrows and a visitor.  I need to google to confirm it though because identifying birds is not something I am great at.

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25th May 2007

Friday May 25, 2007

ASD related

A really neat article that left me wanting to know more.   You’re adopting who?

Joy Is Not An Outcome is a powerful blog entry from one of my favorite bloggers that has stayed with me.

The high cost of “high function”  talking about low vs high functioning labels

Other stuff

For my mom, who missed the AI final song and wondered “what’s YouTube?”  I just can’t believe a 17 year old held it together in that emotional of a moment to sing a song like that.  This is My Now

In the “trainwreck of the year”, we have the ladies from The View in a fight

 

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25th May 2007

Friday May 25, 2007

You’re adopting who?

A couple’s decision to take in an autistic child draws callous reactions.
By Ralph James Savarese, RALPH JAMES SAVARESE is the author of “Reasonable People: A Memoir of Autism & Adoption,” which will be published Tuesday by Other Press.
May 21, 2007

‘WHY WOULD anyone adopt a badly abused, autistic 6-year-old from foster care?”

So my wife and I were asked at the outset of our adoption-as-a-first-resort adventure. It was a reasonable question in this age of narrow self-concern — far more reasonable, or at least more reasonably put, than many of the other questions we fielded.

For example, “Why don’t you have your own children?” a wealthy relative inquired, as if natural family-making were a kind of gated community it was best never to abandon. “You two have such good genes,” she added. “Why waste them?”

A colleague at work confronted me in the mailroom with this memorable gem: “Have you tried in-vitro?” She feared that we hadn’t availed ourselves of the many wondrous technologies that rescue infertile couples. “Wouldn’t that be better than adopting a child with a disability?” she asked, drawing out the word “disability.” “God knows what that kid’s parents were doing when they conceived him.”

“We’re not infertile,” I barked. “We have a relationship with the boy.”

My wife, an autism expert, had offered his mother services, but as the woman found it increasingly difficult to care for her son and then dropped out of the picture altogether, we’d started spending time with him. His first communicative act with language, at age 3 — the sign for “more” — we’d taught him while tickling his belly.

He later made that sign in the emergency room of a hospital where he was brought after being beaten in foster care. Upon seeing us — we’d been called in to try to calm him — he stopped in his tracks, paused (as if to allow some associative chain to complete itself) and demanded obsessively to be tickled. I remember searching on his chest for unbruised patches among the purple, blue and black. He was that frantic in his quest for the familiar and, dare I say, for love.

To this day, I can’t believe how callous people were; the strange anxiety that adopting a child with a disability provoked. And the anxiety just kept coming. “Healthy white infants must be tough to get,” a neighbor commented. No paragons of racial sensitivity, we were nevertheless appalled by the idea that we’d do anything to avoid adopting, say, a black child or a Latino one.

As offensive was the assumption that we must be devout Christians: hyperbolic, designated do-gooders with a joint eye firmly on some final prize. “God’s reserving a special place for you,” we heard on more than one occasion, as if our son deserved pity and we were allowed neither our flaws nor a different understanding of social commitment. The journalist Adam Pertman, in his otherwise excellent book, “Adoption Nation,” reproduces this logic exactly when he speaks of “children so challenging that only the most saintly among us would think [my italics] of tackling their behavioral and physical problems.”

Despite the stigma attached to “special-needs children,” people do adopt these kids. And yet, many more Americans spend gobs of money on fertility treatments or travel to foreign countries to find their perfect little bundles. I’m haunted by something my son wrote after we taught him how to read and type on a computer: “I want you to be proud of me. I dream of that because in foster care I had no one.” How many kids lie in bed at night and think something similar?

The physical and behavioral problems have been significant, at times even crushing. The last eight years have been devoted almost exclusively to my son’s welfare: literacy training, occupational therapy, relationship building, counseling for post-traumatic stress — the list goes on and on. But what strides he has made.

The boy who was still in diapers and said to be retarded when he came to live with us is now a straight-A student at our local middle school. He’s literally rewriting the common scripts of autism and “attachment disorder” (the broad diagnosis for the problems of abandoned and traumatized kids). These are hopeless scripts, unforgiving scripts in which the child can’t give back.

My son does, and others can as well. Recently, in response to my hip replacement, he typed on his computer, “I’m nervous because Dad has not brought me braces [his word for crutches].” I was just home from the hospital — wobbly, a bit depressed, in pain. To my question, “Why do you need crutches?” he responded endearingly, “You know how I like to be just like you.” My son was trying to make me feel better, taking on my impairment, limping with me.

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25th May 2007

Healing challenges

With Zach’s teeth issues, it has been interesting trying to feed him.  He can’t really grind meat until he gets the implants in the back of his mouth and he is struggling to figure out how to bite again with the new front teeth.  So, I have been making much use of the food processor and blender, with interesting results.

The food still tastes the same, but it looks really weird.  Like the Lasagna I made the other day that ended up looking green because of the veggies (especially spinach).  I ended up cracking open another can of tomatoes for the top layer so it at least looked a little more normal.  Or the rice/chicken/cheese caserole thing where I blended everything except the rice,  it looked rather pre-chewed, to put it kindly.  It tasted great, but I couldn’t even hide it under a layer of crunchy toppings because that would have hurt his exposed gums. 

In general, pasta is working, and he can do ground meat, so I have something to work with, but it is really stretching my cooking brain as to how to change up recipes to make them easier for him to actually enjoy.  Tomorrow or the next day I am going to try chicken fried steaks, mashed potatoes and gravy, except substitute hamburger for steak.  I am really reaching here…if anybody else knows of something easy to chew, let me know. 

At least he has moved beyond Ensure and smoothies.

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25th May 2007

Friday May 25, 2007

I think Zora’s growth spurt has gotten her totally off balance.  She keeps falling over.  She fell over and hit her lip again in the same place and made it bleed again.  Then she hit her face on the table and almost gave herself a black eye (there is a little half moon sort of shape just off the side of her eye).  If she keeps this up I am going to find a little pair of boxer gloves and a pair of silk shorts and take her to JCPenny and get a picture.  She is starting to look like a little prizefighter with curls.

In other news, I went downtown to the county Developmental Disablity office yesterday.  I was so not looking forward to it, but it turned out to be the easiest goverment agency I have ever dealt with.  I walked in with my notebook of all of his reports and evals and recent medical records and she actually told me “you might possibly be the most organized parent I have ever seen”.  I asked if I could tell my mom that.  lol.  I can’t say that “most organized” is a comment I get very often.  She said that he will be approved (no guarantee, but almost), which puts us on the two and a half year waiting list to get a case worker and then start getting benefits like respite care.  So, when Zane is about 8 years old I might be able to have somebody babysit him besides my parents or the occasional student that I know is out there, but I can’t seem to find (or afford…it is in the $20ish/hour range to get a sitter for just him).  At least I do have my parents, because I can’t imagine how desperate I would feel if I either had a medically fragile kid or had zero support and had to wait that long for benefits.  I really think that medically fragile or people who need modifications to get things like wheelchair lifts should have a zero waiting time, but there I go, being all liberal and stuff.

I have talked to anybody I can think of to try and find some music lessons or music therapy for Zane.  I didn’t get any answers yet, but I knew that I probably wouldn’t right away.  I needed get the word out that I was looking for somebody though so that if it comes up, they will remember that I was looking for something.  I also am going to try and talk to my MIL who teaches music to see what she suggests.  She lives in Texas, so she doesn’t have any direct connections to around here (I assume), but I need to talk to somebody who is familiar with the landscape at least so I can get some direction on how to proceed.  I also got at least “a” name of somebody else who might know.  I hope to call him tomorrow.  I haven’t got a clue how I am going to pay for this, but one step at a time.

Zach is still on the job hunt.  He has an interesting, but not lucrative, offer pending.  He is still looking for more though.  It is hard to be patient.

Finally, I have had a few offers for playdates.  I can’t tell you how exciting that is for me.  I hope to be able to make some dates sometime next week.

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23rd May 2007

Wednesday May 23, 2007

My baby girl took a header into the concrete last night. 

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After the initial scare and bleeding, she was grinning and giggling with a few minutes. 

 

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  • Zane's age

  • Zane is 12 years, 3 months, and 27 days old
  • Zora's age

  • Zora is 8 years and 4 months old
  • Random Quote

  • “you don’t look autistic!”

    Yes we do. You are just grossly misinformed about what “autistic” looks like.
    — Brigianna (MDC): Autistic, with Autistic child

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