Taking the Scenic Route

Get out your kleenexes….

Video of “I would die for that“.  About the heartbreak of infertility and loss.  Waiting just under 7 years for Zane, several of those with no conceptions, then a series of 7 miscarriages for those last 5 years, and then another loss in between the two kids, I can so identify with this song. 

Oh…I am so excited!  I feel like I have been waiting forever for them to have this online so I could share it with you all.

Zane is “famous”!

Check out the cover, and the article on page six and seven.

Zach’s class is going well.  I feel bad for the students though because the pace is just crazy.  I took it as a regular 16 week class, and although I got an ‘A’, it was probably one of the toughest classes I have taken, right up there with A&P.  The summer classes are already nuts, but trying to take an 8 week course in 5 weeks is just incredible.  Zach seems to be posting either lecture notes, a quiz, a video to explain something, an assignment, or answers to questions every few hours, even through the weekend (at least until they are caught up).  They aren’t completely caught up yet, but they should be soon.  He seems to have about the same balance of people doing really well, barely hanging on, and totally lost as one would expect in an entry level programming class, so that is good.  A few of the ‘really lost’ are getting hung up on things that wouldn’t be a problem if they had a little better reading comprehension, but that is pretty par for the course. (it is sort of hard to get used to the literal-ness and specificity of language in computer jargon when you are used to using language in a more social way…it is subtle, but very hard to get when you are new to it or your brain just doesn’t function that way) I am impressed with the students who are staying with the pace and doing really well, which speaks well of both their efforts and Zach’s ability to get across information in that format.  The fact he is not just a ‘theory’ guy, but also a power user helps a lot because he is able to create demonstrations and little programs that can be used to help teach the class more effectively than just lecture notes.  Some things really have to be shown to be understood, and he is able to do that.  I am really proud of him.

Zach took Zane to the friendship group this morning.  During the session they asked Zane to ‘Get an orange and put it in the basket’.  He didn’t see the fruit, so he picked up an orange letter and put it in the basketball hoop instead of getting the orange and putting it into the fruit basket, causing confusion for a bit until they realized that he did follow directions, just made the wrong assumptions.  Zach laughed because he realized that is something he remembered having a lot of problems with that kind of thing as a kid.  He made the wrong assumptions and would get into trouble for it.  He told the clinical educator that because he had that problem, he swung completely the other direction, which is the basis for one of his pet peeves….he hates it when people give vague directions because his mind automatically pulls up whole lists of ways to interpret the directions.  He handles that by asking a bunch of questions, but it is also why computer programming has such an appeal to him.  Things are described in much more specific ways, once you know the language/jargon used.  Computers seem to be one of those things developed by people on the spectrum and for people on the spectrum. 

Knowing that about Zach, I have to tell you that filling out the piles of paperwork and, especially, ‘parent observation’ type questionnaires are a nightmare in this house.  The forms are written by people who are most definitely NOT on the spectrum and there are a lot of questions along the lines of “does he respond appropriately to _____” that require some leaps in assumptions and understanding what is ‘between the lines’, so to speak.  Zach and I spend an inordinate amount of time discussing the meaning of “appropriately”.  Zach argues that the question isn’t specific enough…what is ‘appropriate’, in what circumstance, who is the audience, who is to say what the exact ‘appropriate’ response actually is, and, that is usually followed by, ‘do they mean he *always* responds that way?’, or *sometimes* does? and what constitutes “sometimes” vs. “seldom”, what is the standard?  It can take us two hours of debating every. single. question. to fill out a 15 question sheet.  If I just fill out the sheet, he will see it and argue that I am not answering them correctly because he often doesn’t think there is anything atypical (or at least not severely atypical) about how he responds to things.  Every time I fill one of those things out, I am assured that autism is, indeed, genetic.  lol.

On a funny note, one of the questions on the latest questionnaire was “Does he respond appropriately to losing a game”. This prompted a very long discussion, finally agreeing to write in “He doesn’t get angry, he just changes the rules”.  It is one of those traits that just makes you have to sort of chuckle under your breath.  He doesn’t get mad, he just pulls some of your cards/pieces back into play as if you didn’t make your last move, or dig a card out of the deck that will beat yours, or will reset the computer game so that he is playing on an easy level and change the settings for you so you have to try to beat him playing on an expert level.  (like in a racing game he will take your controller and make it so the controller doesn’t respond well and insist on playing another round where it almost impossible for you to win).  We are working with him to learn how to lose gracefully, and if he is in a decent mood, he does better now, but it is a process

Now, a few pictures.

Remember me mentioning that I had laundry piling up because I was out of laundry detergent?  (until yesterday, of course)  Zach moved all the laundry into a pile, instead of spread out on the ground so that Zora could drive her truck through the space without getting so frustrated.  Zora saw the pile of clothes a little differently.  She saw a ladder.

she was on a mission to shake every bottle

and explore the rest of the counter

and then suddenly realized she had an audience

And a few of Zane, all snuggled into bed with his Mickey Mouse, listening to Daddy read stories at bedtime.

Good night my sweet boy.  Happy Dreams!

If you have a child with autism, don’t move to Kansas.  Oy.  I went to the update on the Governor’s commission for an autism waiver tonight.  They are trying to start up a waiver that covers services for autism here like they have in a lot of other states already.  We are on the waiting list (a 3-5 year wait most likely) to get the Developmental Disability/MR waiver that he became eligible for when he turned 5, but it doesn’t cover much, so I was really hoping this autism waiver would be passed. 

Assuming the federal funding does come through, they are going to start accepting applications for the autism waiver starting January 1st for people five years old and younger.  Zane turns 6 a few days before this, so he won’t be eligible to even apply.  But, it sounds like it isn’t a huge loss because of all the kids that do qualify in the entire state, only 25 will be chosen, by either “first come, first serve”  (which translates to the top 25 envelopes of the boxes of applications) or a lottery (after a roomful of ticked off parents made it clear that ‘first come, first serve’ would mean that the only way you would have a shot was to go to Topeka and sit in front of the offices to make sure your mail got there upon opening).  And, if by some miracle you happen to get picked as one of the golden 25, the only places you can get services are places that accept Medicaid.  There was actual laughter when the politician chosen to present this to the parents said this.  There are almost no providers in the first place, and those that do exist have long, long wait lists.  It is just ludicrous.  I am pretty sure both of the places that Zane gets therapy aren’t covered by Medicaid.  (at least they weren’t covered by Healthwave, the state funded low income insurance we used to have on the kids). 

It is such a joke.  There were two parents there that said this cemented their families decisions to move to another state (one was Florida) and another mom said that she was just kicking herself because she left Washington State to move to the midwest when she was pregnant with her son, who has since been diagnosed with autism. 

I can not tell you how lucky I feel to have the providers we do have.  I have heard horror story after horror story about some of the EI providers around here (and a few good ones, of course, but they are few and far between from everything I have heard) and even more about the school systems.  One parent, in her comments, asked about what she was supposed to do when the school system was not providing the services they were supposed to and there was nothing else available to her because of the DD waiver waitlist, and now her child is too old for the possibility of the autism waiver.  When the guy responded “you should talk to your school board”, you could hear the guffaws and murmurs all across the room of parents who have BTDT and have gotten nowhere. 

Oh, and another thing…in his comments he said that the people who would be doing the evaluations would only have a bachelor-level education in social work or something about human services.  It is a joke.  When the idea that people with such a low level of education would be doing the testing, he started back pedaling and saying that the people they would contract out to do all this testing and run the program would determine what they felt was best, and if they felt it was best to go with a higher level of education, they would do that.  It was so obvious that it probably wasn’t going to happen and he already had his scapegoat lined up.  The funding they are getting is pretty low (something like $10million for the entire state, divided into research and services I believe)  The amount they were talking about each child getting in services was something like 20-30K-ish, which is just insanely low when you consider the services Zane gets, which is 3-7 hrs a week, depending on the time of year, are worth around $20K. (not including when we had him at the YMCA (had to drop the membership because we couldn’t afford to renew) or the music therapy we want, or the hippotherapy we want to do for him, or the doctors appointments and extra stuff we go through just to get stuff like eye and ear exams, or that we can’t get babysitters for under $20-25/hr for just him, and then need a second babysitter for her.) They are talking about ABA (which is supposed be done for 40 hrs/week), plus ST and OT and “family counseling” and some other things that I can’t recall right now.  I seriously doubt the services are going to be worth a damn at this rate, so I suspect it is actually a blessing to have been born 4 days too early because it would be a huge hassle with very little chance of a return, but I would have done it anyway and I just would rather not spend my time banging my head against the wall like that. 

Another thing, there were some comments that the test they were using to evaluate does not do a good job of evaluating kids with autism.  I don’t know much about the test…I have heard of it…something with Vineland in the name I think…but I don’t know anything about it.

In the circle of parents I talked to, one said that Kansas was ranked 48th in autism services.  I have no problem believing that.  The states that were mentioned as being at the top of the list were Florida, Washington State, California, and Missouri (although I am not sure if that is a top state, or just significantly better and close by). 

Off to try and find the website with rankings.  I wish I could find one with school systems rated…I can’t get a straight answer from people where the best school district is around here, but I think it is because they are all just differing degrees of suck.  lol.

Since it seems to be on topic with this post, I want to direct you to some recent posts by Sarah Ariella that I really identified with and appreciated:  College = learning to argue?, Priceless, and although I haven’t hit this yet, it is worth a read too – required fees = demand for equal services.

and btw…it is perfectly possible I misheard some of the things tonight.  My brain is buzzing it is so stuffed with information, but this is what I recall.

The really cool thing about the meeting though was the networking.  All of us feel so isolated and after the dog and pony show, we were all back there exchanging numbers like we were middle school girls leaving summer camp and wanting to keep in touch with our ‘best friends’.  lol.  People were writing as fast as they could trying to gather  phone numbers from people before they left.

Good day today.  Mom and Dad came up, took us out to Ci-Ci’s pizza and then Mom and I went to Sams and she bought us some supplies.  I have enough laundry detergent to start up my laundry again (was saving the last load worth of laundry in case of an emergency, like Zach needing a specific shirt for a job interview…didn’t want to wash it in dishwashing soap.  lol).  Also got some hair conditioner, soap (down to the last bar) and other supplies and food.  Our fridge is stocked again and we have the extras that make life a whole lot easier.  It was such a relief for us.

They met us at Zane’s therapy place, and when they walked in, Zora was trying to follow another little girl down the hall, saw Grandma and made a big u-turn and ran to grandma.  lol.  My dad came with Zane and I to watch Zane’s OT, so he finally got to see what Zane does in therapy while  Mom watched Zora.  Both of the kids were really excited to go out to pizza afterwards and ate like they were starving.  lol.  They both have really ramped up their eating the last week or two, which was a little alarming when we were suddenly not able to just go out and get groceries.  My parents made sure it wasn’t a crisis, but their timing was just incredible. 

We also got a package from Papo and Grammie (Zach’s dad & wife) that included a really neat devotional for Zane, and a swimsuit and cover-up for Zora.  She didn’t have a suit, so it was perfect!  I also got a book on Autism that I hadn’t seen before but looks really good, and Zach’s dad sent a check to help us out until payday. 

It was a bountiful day in our household today and we felt really blessed.  Zora finally got back to sleep after waking up for a several hour tantrum and not being able to get back to sleep, and I need to hit the sack.  If I get a chance to sit down tomorrow, I will update a little more.

One of the headhunter services is interested in his resume and it is for a placement in a company he is wanting to work for.  It would be a contract until December, but this company sometimes hires on after the contract expires, so it could turn into more, and it is one that is for a more normal wage instead of the co-op wages.  Yeah.  I hope this will turn things around for us.  She will be presenting his resume to the hiring manager soon and then they will call for an interview if they are interested.  She thinks they will be.

My dearest daughter,

I know you don’t want to take a nap, and you are transisitioning from two naps to one nap a day, but please stop screaming.  You aren’t sleepy enough to take a nap, but you aren’t awake enough to be in a decent mood.  You are making us all crazy right now.  Your brother and daddy both can’t handle the screams, and your mama’s patience is mostly spent right now.  Can you just go play with something…anything…I will even let you dismantle everything out of any drawer you want to if it means you will let go of my pant let, stop hitting me when I pick you up, and stop. the. screaming. 

Your loving, tired, Mama

From around the web

I can identify with this way too much.

This one too.  Some days I think I should have gone to law school because I feel like I spend my time arguing all the time anyway.

Gonna vent a bit here.

Money sucks. We found out today that Zach’s dad will help us, but nothing even close to what we need.  It won’t even cover rent, much less living expenses.  I just find that so frustrating because we *know* he has more than enough, he is just never very willing to help us when we really need it.  I guess you have to have experienced hardship yourself to understand it.  We weren’t asking for handouts, we just wanted a loan because the money is coming, it just isn’t here right now.  Oh well.

Then we found out the paperwork for his pay was stuck in the Dean’s office until last Thursday, it is supposed to be in the budget office now, but nobody can find it.  After the budget office it goes through HR before finally being forwarded to payroll.  There is very little chance of getting  a paycheck on July 13th now, and we *might* get one on July 29th.  We have no idea how much of a paycheck that will be though…are they going to give us a typical paycheck amount, half the summer paycheck (was going to be given to us in two lump sums) or if we will get the entire lump sum at that point.   July 29th is a long ways away and it is possible it will get kicked into August at the rate this is going.   Zach has been on the phone all day trying to figure out where his paycheck is and it is really, really frustrating to try and even find out this much in such a bloated government system.

We are out of laundry detergent, hair conditioner, and low on a lot of other basic things, we have another car insurance (minimum liability only) payment due soon, and the bills like electricity, water, trash and internet service (which is vital to his job) are going to be coming due before the paycheck comes.  Oh, and therapy.  lol.  I hope they will just let us keep coming because I would just be so upset if we lost our slot because we can’t afford it right now.  We are behind on those bills right now, and one of them we got the other day was over $1K.  Zane absolutely needs that though.  We will find a way to catch up on that, so I hope they are willing to let us keep coming. 

Not to mention things like food.  My parents will make sure we don’t starve, but they aren’t exactly rolling in the dough either.  Harvest was a few steps beyond sucking this year.  The entire field yeilded less than a truck of animal food grade wheat.  (it was frozen, then snowed on, then flooded, then hailed on, then the bugs came and got what was left)  Plus, I hate, hate, hate having to ask my parents for anything.  They are willing to help, but they can’t afford to any more than we could afford to help somebody right now. 

Zach is still looking for another job.  He is also checking with people again that see if they have any more projects he can do to bring in some cash.  Something has to give soon.  This is just crazy. 

We finally left a message with the landlord.   We have been trying to get in touch with her in person, but since that is not working, we had to finally leave a message.  She was probably wondering what was going on because we usually pay about a month early for rent anyway, so it is late according to our pattern.  We don’t even know what to tell her, but I hope she is compassionate and doesn’t start eviction proceedings on us.  *sigh* 

This just sucks, sucks, sucks.

edited to add….

Heh…well, his paperwork grew wings.  I guess the barrage of emails to every person in the chain helped move it along a little faster.  It looks like we will get a paycheck on the 13th, and it will be half his salary for the summer.  Not a huge paycheck, granted, but at least enough to be able to negotiate a bit with the landlord and other bills. 

He also realized that he can probably reconsider the $6-8/hour part time jobs now that he has a job that covers rent and basics.  The co-op jobs pay horribly, but they might mean he can get his foot into the door at some of the companies that aren’t giving him a chance now because, evidently, teaching UNIX and programming and data structures and database doesn’t qualify as “experience” in those things to them.  ugh.   He just needs a foot in the door and the chance for them to see how good he is at what he does and it should translate into a better job for the future. 

It is a little frustrating to make the same wage as you did when you worked at Starbucks as a barista when you almost have your Master’s degree, but hey, at least it might lead to something better. 

edited to add again….

Well knock me over with a feather.  The landlord said “just get it to me when you can.  No big deal.  As long as I know what is going on, and I know you guys will get it to me when you can.”  *thunk* somebody call 911!  lol

Zora the last week.

from today, before the pile of sand on her head.