Taking the Scenic Route

Sunday August 19, 2007

19th August 2007

Sunday August 19, 2007

PSA: “If they do that in public, think of how much worse it is in private”
 
I see this statement all the time on here and it really annoys me because of the assumptions inherent in a statement like that. Just because it might be true for some people does not, in any way, make it true for all.

I know that I get more testy in public than I do in private because it is a lot more stressful to deal with not only a SN child, and a toddler hellbent on destruction, and doing it in an unfamiliar environment than it can ever be at home. Dh, who is the gentlest soul on the planet when we are home or in another very familiar environment, is on edge in public and more likely to say things that are more harsh than I ever hear at home.

I get so sick of that assumption and I wanted to speak up. It is judgemental and wrong.

 
At home I have the resources to deal with meltdowns. I have quiet rooms where I can turn off lights, and I have food and water available, and they can be naked or at least barefoot.
 
At home I don’t have people with stinky perfume, talking loudly, bumping into me. I don’t have people looking at me. There are boundaries that the kids can’t run past and get lost, run over, injured, or taken.

At home there are no strangers making nasty comments, there are no lines, and if you have to wait, there is something you can do to entertain yourself.

At home I can do things at a pace that accommodates everybody’s needs and abilities. If I am going too fast, we can take a break, or shift gears.

At home I can, to a degree, control the ‘weather’. If the temperature is uncomfortable, I can turn on the A/C or furnace, I can put water on to boil if it is too dry, I can put everybody in the tub or sprinklers if they are too hot.

At home I am not judged, I am not criticized, I get no unsolicited advice, I have time to wait for my son to find his words without others getting up in arms. At home I never hear anybody telling me I should spank my child.

If anybody wonders why I am a much better mom at home, they need to think about the difference in the challenges I face when I am not at home.

 

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18th August 2007

Saturday August 18, 2007

Zane’s first day of school

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 I have a long ramble about the day on a protected post.  You have to log in to see it.

 

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18th August 2007

Kindergarten Starts

warning:  excessively long post, written over a number of sittings, mostly so I can process the day and remember what I need to for later meetings.

Zane started Kindy yesterday.  It was orientation, so no backpacks or school supplies yet, and they spent the day mostly explaining rules and procedures and things like that, with some group book reading thrown in. 

I wish I could say it all went smoothly.  It wasn’t a disaster, but it wasn’t really all that smooth either.  I suspect it will go a LOT better once he is in his regular classroom and they start doing things.  He really doesn’t do well with directions given verbally, especially the insane amount they had.  I am pretty sure he wasn’t the only kid in the room that was not really getting everything though.  He will learn by doing, and they only “did” so much today. 

Apparently, the school uses a LOT of sign language to communicate to the kids in group settings.  That requires him to look up, which is even more of a PITA than trying to get him to listen.  I am thinking of talking to STs to see if they can help with this.  I can think of things to do to help, but I don’t have the energy right now.

When we arrived, they had 4 trays on each little table, with 20-30 plastic cubes that could be connected together.  This was a great starting activity as kids arrived and Zane understood immediately how to play with them and enjoyed it.  On a funny note, I was concerned about how he would respond when kids said “hi” to him.  He ended up at the quietest table.  Not only did they not say hi to each other, I don’t think any of the four boys even talked. 

While they were doing that activity, the pulled each child out into the hallway to get a photo of them.  Zane, naturally, didn’t look up, but that was pretty par for the course.

Then they had all the kids sit on the big rug.  The first part was spent explaining how to sit.  Some of the things that sort of irritated me, as the mom of an ASD kid, was all the cutesy little euphemisms they used.  To sit on the rug, they said “criss cross applesauce” which meant you were supposed to sit cross-legged (I am guessing “Indian Style” is not PC anymore).  And then you were supposed to pretend your hands were “spoons” and your lap was a “bowl” and you were instructed to “put your spoons in the bowl”.  I’m starting to sound like Zach here when I say “Just say ‘put your hands in your lap’ and be done with it.  That other is of no use outside that particular school. 

Then they worked on how to stand in a line.  That was a really low moment.  Up until that point you couldn’t really tell the difference between him and the rest of the class.  He did not understand what they were doing, plus, they were spending f.o.r.e.v.e.r just talking and not actually going anyplace.  They wanted all the kids to put their hands behind their back (with another cutesy phrase “put your hands home” or something stupid like that), face forward, and look at the teacher.  (yeah, and they kept waiting for all the kids to accomplish this at the same time.  So, it was far too long of wait for Zane, especially when he didn’t understand what was going on)  Zane was surrounded by a few kids that seemed to be only a hair more functional than Zane at understanding directions (well, except for the cute girl that seemed to make her way near Zane much of the day), which didn’t help either.  One of them was wearing a super bright orange shirt (probably using the same theory I was when I dressed him in bright green…harder to lose track of him) and Zane seemed to follow that shirt around, and did an absolute meltdown when I held him into line.  He was screaming and melting down because I was waiting to be the end of the line because of how he was acting.  (nice circle of crap there). 

Got back to the room and had story time.  Again, enormous amounts of time spent on stuff that Zane only learns by seeing (including the criss cross/spoon nonsense), not listening to, so it was really rough waiting for the story.  Then they read the story, so slowly and quietly that I could barely hear it.  And they kept stopping to ask questions about the book.  This is why me getting a reading list before story time is important.  The first time through a book he is so driven to read the whole book, any break in the flow is going to be really hard for him.  Once he knows the story, he can dissect it a lot better and answer questions, but that is really hard for him the first time.  It was one of the Bindergarten books I have heard about.  I did not like it.  I will not buy it.  lol.  Most of the kids were pretty restless which means his peer models were not modeling very good behavior either.

During the story hour they started pulling kids to do individual accessments.  They pulled Zane fairly early and took him to a different room to do his accessement by the teacher he will probably end up with.  She wasn’t the one I was initially told it would be (but the initial one specialty is ESL kids, and a bilingual classroom is about the worse situation possible for him…he doesn’t have that thing that distinguishes one language from another and uses what Spanish he knows indiscriminately in what little talking he does). 

The teacher he will likely end up with has had autistic kids in her class before, was really tolerant of kids who develop odd routines, as long as it didn’t interfere too much with functioning, and maintains a very routine oriented classroom.  (she said to me several times during the morning not to worry about this being the norm, because the chaos and volume was about to drive her crazy too).  She had Zane read off letters, numbers, and shapes.  Instead of feeling like she was just placating me about his abilities in math, she seemed familiar with the concept that even though he is so delayed in language, he can still be smart, and he can still have strong abilities elsewhere.  She said that she was going to have to keep in communication about what they were doing in the classroom, so that if they were covering something Zane knew really well (and might display behavior difficulties from boredom) she would have him doing something on the computer instead.  She seemed to have a much more comprehensive grasp of what “autism” means than typical people and seemed to be on the better end of the spectrum of teachers I could get for him.  Time will tell, but the start is promising.

The line for going to recess was MUCH more successful, in part because they were actually GOING someplace, and in part because they didn’t stand there for 10 minutes talking to the kids.

Unlike much of the rest of the day, which was a combination of good/bad, recess seemed to be a total success for him.  He was mostly indistinguishable from his peers, and happy.  He shared a tire swing with two other kids, and the three of them spun and yelled to their heart’s content.  They followed each other down slides, and generally ran around looking like a typical group of kids.  Zane was happy.

Lunch went better than I anticipated too.  He finished off his chocolate milk before touching the food.  lol. He wanted the peanut butter sandwich over the pork sandwich (can’t say I blame him, the pork looked a little blah to me.  It was an uncrustables.  He wasn’t real sure about that, but took a few bites before putting it down. (he eats whole wheat, natural pb sandwiches cut into triangles, not the crustless circles with sugary peanut butter).  He saw the bag of teddy grahms and realized they were cookies and wanted those, then I actually had to feed him the little peach square because he wasn’t really convinced that it was fruit.  (he loves fruit, but this is fruit cocktail from a can).  He ate the rest of it once he got that first bite down.  He wouldn’t eat his pasta salad, but most of the kids didn’t either.  He eventually did go back to the pb, and was on his last few bites when they announced it was time for lunch recess.  That went pretty well too, but instead of teachers out there it was recess monitors who didn’t understand why I was there.  They were a little hostile, but I was glad to know they are really aware of adults hanging out on the playground and not afraid to confront them.

The afternoon things started overwhelming him a bit.  He was a bit more stimmy and his ability to listen was decreasing.  They read “chika chika boom boom” which is one of his favorite books, and he started reciting it when they took too long.  We read it very high energy, almost like a skat, spoken word song, complete with the sound of jazzy drum rifts through each page turn to keep the rhythm, so the really slow version of the teacher was about to send him over the edge. 

During the craft afterwards I started seeing evidence that he was starting to loose concentration.  He was really struggling to use a scissors, much worse than typical.  His leaves for the Coconut tree looked nothing like the lines he was supposed to cut on, the trunk was cut with a wide berth, but it wasn’t as scattered, and the coconuts, which were the hardest to cut, actually weren’t too bad.  He cut the circles with just 1/8th-1/4th inch around the line, but pretty consistently.  He did the gluing part really well and was able to write his name on it, although large, was written reasonably well.  He had pulled himself together a bit, which was a good thing to see.

Then he had music class.  Once again, a line.  Wasn’t too bad, but it will take a lot of work for him to understand putting his hands behind his back.  He sat front and center, which meant I couldn’t really get to him well. However, the music teacher seemed really good.  For one thing, she used very clear language to redirect kids back to what they were supposed to be doing.  She also used visual representations of the music patterns (a clapping pattern) they were doing to the hello song.  I thought that was pretty impressive since it is a field that is, by nature, almost exclusively auditory.  I actually felt like I didn’t need to be there through much of that class because she was handling the class, and the disruptions so well, and Zane didn’t really stand out that much in that class compared to some of the other things.  If you know what you are looking for, you could tell he was edging closer to a meltdown, but some of the other kids were acting out too, just in a more typical way.

Next, gym class, which ended up being the last class of the day for us.   I am guessing he had the snack and maybe art class left in reality, but the gym class was exactly the WRONG place for him to be at that point of the day for him.  He didn’t have anything left to cope with it.

In gym class, the kids aren’t allowed to run.    She had them walking around the gym, practicing walking and not touching each other, and then when she said “freeze”, they were supposed to stand like statues at first, and then she changed it to standing like statues with hands on your knees facing her, looking at her.  Yeah.  That went really, really badly.  Everybody walking all different directions, and of course a few of the boys start running, which sets Zane off running, and by this point in the day he has already been sort of stimmy for about an hour, so it was really too much to ask for him to follow directions in a big, echoy room, that smelled like food and sweat, with 20 or so other kids walking around chaotically.  Of course the gym teacher didn’t endear herself to me when I overheard her talking to the teacher who was explaining why I was there and she declared, not kindly, that “I thought we weren’t supposed to get autism kids here anymore”.  (the school used to have an autism room, so that is some of where it was coming from, but it sounded rather nasty to me).

I pulled him out in the hall and asked him if he wanted to go back to the kindergarten room or back in the gym.  His eyes were on the verge of tears, so when he was quiet (which often means that the question wasn’t quite right and he didn’t know how to tell me) I added “or do you want to go home”.  He wanted to go home, so we did.   

I don’t know how people felt about us going home, but so far he had enjoyed the day, and I wasn’t going to ruin it by pushing him too hard.  We made it until 2:30 or so, and I thought that was pretty good considering preschool was only 2.5 hours, and it was chaotic and new, and really, you can’t ask for a better day from him given the circumstances.


The day didn’t end for me there.  When I got home, Zach still had a high fever, Zora was cranky, Zach was out of medicine and we were low on groceries.  I got Zora dressed and took her to the grocery store with me.  I was so tired and sore from the day with Zane that I couldn’t chase her any more, so I put her in the cart.  She screamed, and she kept screaming the entire trip.  She tried to crawl out, she was picking up groceries within reach and throwing them.  It was miserable.  Every once in a while she would stop crying and screaming and scratching at me long enough to listen to a few refrains of a song I was singing.  It took an hour to get all the groceries and medicine.  Normally, if she acted like that I would have taken her home (the worse punishment in her opinion), but I couldn’t do that to Zach.  He had her all day and felt about as bad as a person can feel and not be in the hospital.  So, instead I got the stares and looks of people who either heard her screaming, or me singing, depending on when they saw me.  lol.

Our house is the worse it has ever been, Zach is sick, Zora is cranky, and Zane is stimmy.  My dad is in the ICU, although he is getting better finally, it will be a long process.  Mom has had the roughest week of her life.  There is also extended family that is having a rough time right now.  I am so sore, and tired, and I need to do just about every stitch of laundry in the house, clean up the snacks and toys and papers and general ’stuff’ that is on every surface of the house, vacuum, and mow the lawn.  And it is easily 100 degrees outside.  This week sucks.  badly.

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18th August 2007

Saturday August 18, 2007

No real setback yesterday or last night.
He got the tube from his groin area removed, and I guess that was pretty terrible.
He did sit up for a while and ate a few bites during the day.
I just talked to him and he is in the chair and eating a bit of breakfast. He said he has been up several times.
They will probably move him to a regular room today.
I had a good nights sleep. I’ll go to the hospital for the day again.
Looks like the crisis-es are over. Now the grind begins.
 
Love and good health to all.
Teresa

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17th August 2007

Mom writes Heart Attack Update

The news continues to be good.
They took off the vent breathing tube yesterday and it was like night and day. He perked up and came back to this world. Our daughter-in-law, Joy, is a nurse, and knows how to take care of patients. She was working hard at making him comfortable. He has been in the hospital since Aug 8, so he is getting a bit tired of laying on his back. Now that he can talk, he wanted a pillow here, his feet are cold, there is a lump in the sheet there, water, juice, no water, the pillow is uncomfortable…..and on and on. At least he is feeling and communicating again.
We were concerned about the 100ยบ plus fever he has been running, but evidently the antibiotics kicked in overnight, because this morning the nurse said that the fever is gone.
I talked to him by phone this morning and he said it only hurts when he coughs (he’s on oral pain relievers). He is looking forward to being able to sit up, but right now he has a line in his sit-down area that will have to be removed before he can do that. That will probably happen today.
I had lunch with some of my Ediger cousins yesterday (thanks, Carol and Ron!), and one of Larry’s cousins, Randy Krehbiel, came and we had a nice long visit. I’m thinking it won’t be long till Larry will be up to a brief visit.
I got a good nights’ sleep again last night. Steve is here and getting the irrigation set up for another run.
I’ll spend the rest of the day at the hospital again. It sounds like are moving the direction we want them to. I’m ready for another good day with no bad surprises!!!
Peace and good health to each of you.
Teresa

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16th August 2007

Thursday August 16, 2007

I haven’t posted about Zora cuteness lately, with all the crummy stuff that has been going on, but I think I will take a few minutes to do that.

She still loves music.  She is going around singing songs as she plays now.  The trouble is, she doesn’t exactly have the songs straight yet. 

  • She mixes up Old MacDonald had a farm and Wheels on the Bus:  “yah, yah, yah-yah, yah yah yah E-I-E-I-O, with beep beep beep, beep beep beep, beep beep beep(complete with action of honking a horn) E-I-E-I-O”. 
  • When we sing Away in the Manger, she actually goes to lay down during the “asleep in His bed” part.  Last night, she puntuated that with snore sounds.  I about choked laughing so hard. 
  • In “CHEESE!” (Farmer in the Dell), we realized tonight that she was always waving on the word “Hi” in “Hi Ho The Derry-O” part.

She has figured out, for the most part, how to get undressed.  She still gets stuck sometimes though.  She can usually get her diaper off too.  It might take 30 tries of her pulling down the front, only to have it bounce back because it is still hooked over her tush, but she keeps trying.  She also gets undressed when she gets ticked off.  She is trying to dress herself too, and we often see her walking around with a skirt or shorts around her neck, or wearing a pair of pants on her arms.  (like the time she had pants on her arms like sleeves and was trying to get a drink from her sippy cup, but had to keep pushing her ’sleeves’ up to keep them out of her way).  She won’t wear her hats, but likes wearing Zane’s bicycle helmet around, or daddy’s NASA cap. 

Another common accessory is the stethescope from a play dr. kit.  She wears it both like a necklace, and like a cape.  She is starting to do the same thing with headphones.  The girl is a serious shoe hound.  She loves shoes.  She carries everybody’s shoes, including her own, around the house.  It can be really fun trying to get ready sometimes trying to find all the peices.

Another obstacle to finding things is her obsession with her stroller.  My mom got her an umbrella stroller because the grocery cart was too big for her and causing many, many tantrums as she would get stuck someplace.  We have long since figured out that if we are missing something, go look in the stroller at her stash.  lol.  She has put some serious milage on that thing.

She still loves books and wants to be read to all. the. time.  I have actually hidden a few books that are driving me batty because I just can’t read them any more, at least not for a while. 

She has Zach’s palate.  (this is a good thing).  She likes both typical toddler food, and spicy foods, including garlic, and pickles, and olives.  She likes a lot of different foods, but she has to have a variety.  She never eats very much of one thing.  She does share my love of bread, but I am not sure that is a good thing.  lol. 

She is needing help getting back to sleep now.  Gotta go.

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16th August 2007

Thursday August 16, 2007

As of an hour ago or so he is off the ventilator!  He had a stick with O2 (sort of like the thing that sucks up spit when you are at the dentist) that he can use when he feels like he needs some, but he is already not using it much.  They hope to sit him up later today after they take one of the tubes or IVs or something like that out of his groin.

The first thing he said when they took the vent out was to ask for my mom.  When she rounded the corner his eyes lit up and he puckered his lips to ask for a kiss.  Ahhhh.  Sounds like my folks.  He has also asked for his glasses, which is good because it means he wants to see what is going on around him.  (he has no lenses, so he is totally blind without glasses). 

He is being weaned from the pain meds and is uncomfortable, but not in agony. 

Yeah!  I am so happy.  My dad is coming back!

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16th August 2007

Thursday August 16, 2007

I found out today that Zach’s half sister had a tubal pregnancy that burst her Fallopian tube about 2 weeks ago.  She was still having problems a few days later and found out that she still had a lot of toxins in her system from kidney damage that resulted from extremely low blood pressure (from the loss of blood when the fallopian tube burst).  Zach’s dad is also still having some effects from the strong antibiotics he was on after his appendix from a few weeks ago too.  I got the impression that his was more annoying than serious, but it still isn’t fun.

Zach woke up in the middle of the night with a fever.  He is lethargic and not feeling very good, but not serious at this point.  I will have to keep my eye on him.  That also means I am putting off Zane’s vaxes for school for a week or so to make sure he is catching it.  I also just don’t have the energy to monitor for vax reactions right now, and that can wait as far as I am concerned.  I think he only has the chicken pox vax left anyway, which just irritates me to no end because I think the CP vax is just stupid.

As far as Dad goes, I posted mom’s email from this morning.  I talked to her a few minutes ago and the respiratory therapist is going to come this afternoon and see if he can breath well enough to take him off the vent.  They are trying to balance his healing with his heart with his lifelong history of asthma, which makes the lungs more susceptible to pneumonia and other lung issues that can occur if you don’t move around enough after surgery.  They took out some of the chest tubes today.  He is slowly, but surely, improving.  It is going to be a much longer recovery time than we were initially anticipating after his bypass.  Two major surgeries back to back like that (on the bypass machine for both of them) are quite a blow to the body.

On a lighter note, Zane met a horse this morning.  I took him to be evaluated for getting him on the waiting list for hippotherapy.  There is a chance he can start that this fall, but we won’t know for a bit yet.  It is a race to return the paperwork to get a better spot on the waiting list.  I have a call into his pediatrician to see if I can email an attachment to them to sign and fax back out instead of driving there.  Zach usually does any faxing we need to do through work, but he can’t do that while being sick.  I might also be able to go to Kinkos or something like that, but I need them to know what is needed, so I have to wait for a call back either way.  I don’t think they are in the office on Thursday afternoons, so I am not sure that my call will be returned at this point anyway, since they didn’t get back to me this morning.

Oh, and school starts tomorrow for Zane.

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16th August 2007

Thursday August 16, 2007

I talked to the nurse this morning and she said it had been an ‘uneventful night’. What sweet words!!!
He is still on the ventilator and will be for a good chunk of the day. Dr is letting his body rest by using the breathing machine. Dr said ‘he was a long way down and it will take a long time to get back, but he is young and healthy so I’m confident that it will happen. It will just take time.’
 
The ICU nurse suggested that I not spend too much time in the room when he is on the ventilator because he wants to communicate and cant and it’s so frustrating for them. They aren’t resting when they are frustrated. Actually, I’ve had 2 nurses tell me that. Usually I go in, talk to him a bit, swab his lips and mouth and leave fairly soon.
 
When I left last night, he seemed in a more peaceful rest than earlier. The nurse this morning said that they were weaning him off of some of the painkillers, so he will probably be more fitful due to the increased discomfort.
I got about 7 hrs of sleep last night and the nurse agreed that I would be fine to come in after lunch rather than earlier this morning. The dr comes in about 6 or 7. Yesterday he came in between surgeries.
 
So I’ll be on my way before noon, take care of some business (we got his paycheck from the township, since he won’t be on the grader anytime soon, altho last Sunday morning he figured out how to get into the grader w/o pulling himself up, using a car wench and mounting it vertically and using the controls to lift a platform up and down. So who of you is surprised????)
 
Hopefully today will be good too, altho he will be in a lot of pain, as they continue to wean him from the respiratory and the meds.
 
Keep up the prayers. They are definitely being felt.
 
 
-”Jennifer’s mom”

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15th August 2007

Wednesday August 15, 2007

Thank you all for the support..

I was able to return to the hospital this morning for a few hours before I had to bring back the car I rented to go there. He was still asleep and intubated, and since they weren’t doing the initial ‘let the family come back and see him’, he wasn’t covered up as much and I could see how many wires and tubes he had coming out of him. That was a bit hard, but at the same time, his hand was warmer today and looked more like his hand. I think he might have looked so yellow because I was seeing the tan without the pink under it to make it the typical color.

He had an uneventful night, which is the best we can hope for at this point. He was still bleeding, but it was managable at this point. The nurse seemed pretty positive.  Every time I spoke, he stirred just a little bit, even trying to move his mouth after I told him I loved him. His eyes fluttered open for a moment and some alarms went off (I assume him waking was causing stress because he was feeling the pain), and I decided it would be better to leave because I was having a hard time not talking to him and they wanted him to rest. I think they are going to try and pull the intubation tube out today, and they had been manually moving him some while he was sedated. (I am guessing to keep clots from forming or something like that…whatever the reason is that you are supposed to get up and move after surgery, but since he can’t do it, they are doing it for him).

His nurse gave me a big hug before I left since my mom and the endless stream of visitors he and mom have had over the last few days wasn’t there right then. She was just the best. She was reassuring and made me remember why I have such a deep respect for nurses.

Evidently, I missed my mom and SIL by minutes. They are there now and there have been people from the church and extended family in the same steady stream we have seen since he went into the hospital.

I am off to ds’ OT appointment now, and hope to be back on the computer (and not doing another emergency run to the hospital) later tonight to post any updates.

 

edited to add an early evening update:  He will stay on the vent overnight again.  He is responsive.  When mom asked him how he was doing his lifted his hand and made the “so-so” gesture.  The nurse said “no, you’re doing great!”.  He lifted his hand again and did the “so-so” gesture again to insist he was not doing “great”.  Arguing with the nurse even without a voice.  lol.

They are continuing to give him blood, so those of you who can donate, this is a friendly reminder of how important it is to do so.  It is helping keep my dad alive.

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  • Zane's age

  • Zane is 22 years, 3 months, and 30 days old
  • Zora's age

  • Zora is 18 years, 4 months, and 3 days old
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