Taking the Scenic Route

Do you ever have one of those days where you feel like you are living in a demented soap opera?  I had that day yesterday.  Nothing horrible, just weird ways my past weaved it’s way into my current.

First, I discovered that one of the two music teachers at the school my son will probably go to (99% certainty) is one of two ex’s I had that really started crossing that line between “romantic” and “stalking”.  (the first one was a 16 year old kid who was so naive and sweet that I just think he didn’t understand he was crossing a line.)  I dated Jeff for a few months my junior year, and he was quite a bit older than me.  (I remember attending his senior recital at college and he was older than a typical senior).  I can’t remember exactly how we broke up any more, but I think it was because he wanted more from me than I was willing to give and it just got uncomfortable.  He lived in Wichita and I lived in an itty bitty town about an hour away, so he couldn’t really just ’show up’ while I was in high school, but in college he started showing up to all the theatre performances and would ‘happen’ to sit next to my mom.  (which sort of freaked her out).  I finally got him to leave me alone after I got engaged to Zach and we moved away.  I hadn’t thought about him in years and years. 

Zach’s best friend works in theatre.  (Robert will now be referred to as the “nexus to Jennifer’s ex’s” because he, inadvertently, knows all but one of my exes, granted, that still isn’t a lot of people.  His wife was best friends with the woman who married my first boyfriend, David too)   He worked with Jeff, and, ironically, another ‘almost dated’ guyfriend of mine named “F” (for F Scott Fitzgerald).  When Robert was talking about his work one time, he mentioned Jeff and I was like “dang that name sounds familiar”, but it took a few days for me to realize why.  Well, he relayed the interesting connection to Jeff, instead of the ‘oh that is weird’ type reaction Robert was expecting, Jeff reached into his wallet (in front of his wife) and produced a picture of me and my brother and him in his car from Christmas 1987 or so.  *jaw drop*.   That sort of freaked me out.  This is the guy that might be teaching my son. 

In another weird twist, I talked to Robert last night about my discovery (that he was the music teacher) and asked him, since he sort of knew Jeff, if that would make him nervous as a parent.  He said it probably depends on how he and his wife were doing.  Apparently, the last he heard, Jeff and his wife were breaking up because Jeff had been having an afair with…wait for it…. F’s girlfriend. 

Are you kidding me?  What are the chances?!?

I was in for one more little bit of ‘ex’ weirdness at the end of my day too.  This time it wasn’t one of my ex’s, but it still was somebody who created a lot of upheaval in my life and misery for people I love.

I am reading on of the kid’s favorite books, Silly Sally, to Zora and as I flip past the dedication page, my eyes catch something I hadn’t noticed before.

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one of my MIL’s ex’s.

What a weird day.

http://www.mothering.com/discussions/showthread.php?p=8182099#post8182099

by xaloxe

We are mothers. I remember after DD1 was born asking DH when all the knowledge of motherhood would come to me. I was waiting for this influx of historical memory and information to seep into my brain. But, we are not elephants, we are human mothers. We are not all infectious disease specialists, neurologists, pediatricians, otolarynologists, opthalmologists, plastic surgeons, occupational therapists, chefs, teachers, nutritionists, geneticists… we do not have the combined knowledge of all of these professions plus many more. We are mothers. We are mothers who tend to hold ourselves to too high of standards, and have expectations of ourselves which we will never achieve. We are mothers, and we do the best job we can.

…

We can’t blame ourselves for not knowing everything, we shouldn’t even expect too. We can find Dr’s we trust the care of our children too, and who we respect and who respect us. If the Dr’s miss something, are we to blame? Are they? Should we even worry about blame at all and just focus on the here and now? Similiar to your situation, our DD1 also had a couple episodes of seizure-like activity, one in particular which had me calling a number of her specialists immediatly. No one thought to do an EEG, and I didn’t either so it wasn’t done and we are still left wondering.

We all take our experiences in life and learn from it, and use that information in future dealings. We are not all powerful, but we are powerful. Finding that balance is key to squashing the mama-guilt and turing it into mama-advocate.

A sleepless night might have solved the mystery of what is up with Zane.  Last night I couldn’t get to sleep because of all the things on my mind.  As I lay there, I start noticing that Zane keeps almost waking up because his sinuses are draining and he is occasionally snorting, murmuring, and then trying to get comfortable again.  It dawned on me as I lay there that all of the symptoms he was having could easily be attributed to sleep deprivation.  He is getting enough hours, but I don’t think he is getting good quality sleep.  He isn’t waking fully all the time, but I am pretty sure he is waking out of the deep sleep.

I talked the doctor today and she said it would take about a week to see if the allergy meds work (only had his 3rd dose about 10 minutes ago) and that she would give us some ear drops to see if it helps with him constantly covering his ears.  It will take a bit to see, but allergies would be manageable, although a PITA, at least it wouldn’t be attributable to the vaxes.  So, it is a waiting game now to see how this plays out, but there is a viable, workable alternative to vax damage. 

There are some interesting rumors and speculations we discovered today in regards to the University, and it could prove interesting for us (in a good way).  Hmmmm…..  He also has a bunch of resumes out at some of the local businesses (we want to stay around here for at least another year or so he can finish his thesis without the distraction of moving, but we don’t want to move anyplace in December/January if we can help it.  Been there, done that, ice storms and moving are not a good mix.)

And some cute pictures…we were on the way out the door and she had a new dress on from Grammie & Papo, so we decided to snap a few pictures before any stains.  lol.

My first ever kid made Mother’s Day Card

He wrote “I *heart* you mom” and drew a house (not sure if it because he is really into drawing houses right now, or because I was at home when he made it, or his interpretation of “make a mother’s day card to take home”, but it is cute.)

And the flowerpot he made for me.

The note he wrote on my mom’s mother’s day gift

Showing my mom the flowers he made at school for me.

Showing Grandma & Grandpa the radishes he has growing in a bare space of lawn in the back yard.  (remember the evile box of dirt?  Some of the radishes actually lived!)

and then my camera batteries died.  ah well. 

It was a lovely, lovely day.  We had a barbeque, played with the kids, talked and generally just enjoyed each other’s company.  It was the first time in more years than I can recall that we were able to give my mom a gift and it was really a good feeling.  It was a Bambi statue for the garden I spotted months and months ago that was way out of our budget.  It went on sale, and eventually got to a price that we could manage and I jumped on it.  Bambi has always been my mom’s favorite movie ever, and she loves her flower garden, so it was the perfect, perfect gift for her.  It has been living in our garage since days after we moved here. 

Starting to worry a bit

I am not sure what is going on with Zane, but he seems to have really escalated his stims lately.  He now covers his ears a lot, even with no obvious auditory stimuli.  Hand flapping, toe walking and smelling things (like laying on the floor and smelling the floor) all seem to be increasing, and today we had a very difficult shopping trip with him laying on the floor and screaming.  I am hoping it is just the change in routine, especially the end of the school year, and not the MMR.  I can’t help but be concerned.  I am going to try to up the structure in our home lives (gosh, that is such a challenge when I am also dealing with Ms. Unpredictable Firecracker).  Yesterday we started him on allergy meds too, and hopefully that will help instead of make it worse.  I am worried.  I am trying not to, but there is a part of me that wonders if I totally screwed up by letting him have the MMR.  I was so convinced that it wouldn’t hurt him, after doing an insane amount of research on the subject, and now I am not sure we made the right decision.  Did we just waste a year of therapy and effort with one syringe?  Did we just add more challenges to his life?  This sucks.  Actually, sucks doesn’t quite cover it.  It hurts really deep down to think a decision you made might have permamently damaged your baby. 

We also found out that the IEP will not be in place for the start of the next school year.  They couldn’t get their act together in time, so it will be on hold until August.  They are still legally within their time frame, but I really hoped they would do better than the legal minimum.  I am frustrated, but I know it will work out how it is supposed to work out in the end.  Maybe starting school on the first day, with all of his peers also brand new to school would be too much for him anyway.  Maybe it will be a little better if he goes into a classroom where the routine is more established and the other kids aren’t as hyped up with all the newness.  His challenges aren’t the academic part at this point anyway, so it isn’t like he is going to be behind in that aspect. 

Kid Cuteness

On the other end of the development spectrum, Zora gained a “yes” head bob on Monday to match her “no” she has had for a while.  Her “no” is still really cute because it isn’t smooth yet…she dips her chin down, her face sort of scrunches up in concentration, her tongue between her lips, and she looks up through her eyelashes as she clumsily makes her head go back and forth.  The “yes” is a variation of that, except that she puts her chin on her chest and then throws her head up, then sort of pauses before she drops her head back down again.  The motor planning she is trying to master is just so tangible and absolutely adorable.

In the *really hard not to laugh* front, she is sooooo dramatic.  She looks out of the corner of her eye to see if you are paying attention to her tantrums, and if Zane has just gotten in trouble for pushing her (or anything like that), she will go up to him and fall over crying, as if she has been pushed, but I was watching and he did absolutely NOTHING.  She is trying to get him into trouble!  Little Stinker! 

On Mother’s Day we took down the gate that keeps her out of Zane’s room since there were enough people to keep an eye on her if she was in there (he has stuff in there that isn’t toddler friendly).  As the evening wound down, all the adults were on the couches chatting, Zane was in his room, and she decided to wander in there (looking back over her shoulder to see if anybody was watching…I was out of the corner of my eye, but she couldn’t tell that).  As soon as she decided she wasn’t being watched, she walked on in there.  As soon as she cleared the doorway, I told mom that she would hear Zane yelling for Zora to stop, then Zora crying, then both of them would come out of the room to us.  Sure enough, the words had barely escaped my lips and Zane yelled, Zora cried, and Zane ‘escorted’ Zora out of the room declaring “Zora go back!”.  Zora was pushing back until she saw that we could see her, then she threw up her arms in total drama, threw her head back and wailed as she ran, throwing herself forward, towards us.  Poor kid.  Zane, once seeing that mom had Zora, got the gate and tried to put it up himself, but Zach was right there because we knew that would be his next move.  I am so glad he has his own space now, because this plays itself out a lot in our house, but when Zane has had enough, he has a place to go to escape the insanity of toddlerdom.  (some days I wish I could too. lol)

This is going to be one of those rambling posts, so be warned.

My emotions are such a jumble right now.  I am frustrated and sad.  I have spent a lot of time the last few days updating my files, creating a nice neat notebook with all of Zane’s evaluations, plus phone numbers of all the different resources and all of his doctors and going through my calendar to list when the last appointments were for everything.  It is a pain in the butt, but it seems like the stacks of paperwork always ask all that stuff, and getting it all together in one place makes that process less irritating.  I have also been on the phone with various school people, trying to find the balance between being civil and lighting a fire under them to get moving on the evaluations for the IEP. 

It is such a colossal task when you are dealing with a large school system because everything seems to be done by committee, with dozens of people doing little parts of everything.  I am also a bit beyond frustrated with that school nurse and her inability to call me back and never answering her dang phone.  I know she doesn’t like me, but she also has that grating thing where she is sticky sweet to your face and you just know it is a total farce.  People like that make me twitch.  I just want to get past the neighborhood school and on to the one I will actually be dealing with. 

I also got another suggestion to go ahead and just let him come to the neighborhood school before the evals were done because they had a 5th grade kid with autism whom they were able to mainstream with supports successfully.  I made it clear that wasn’t an option for Zane because I was not going to take the chance of a negative experience for him.  It is better to have him enter the classroom a few weeks later and have the proper supports than to just “see how it goes” and take him on the first day.  He is challenged enough with the social aspects of a classroom when he has supports and I refuse to even attempt school without it. 

I am also waiting on calls back from the people who do the DD/MR waivers for getting things like respite care.  There is a large waiting list to get access to the services, so a part of me is wondering if it is even worth it.  Another avenue of frustration so far. 

And, the other thing I am waiting for is a call back from several places because I am trying to find somebody in town that does either music therapy or has some experience teaching music to a preschooler with ASDs.  I have always had music lessons in the back of my mind, but was not sure how to get that done with him.  Then I did some research and realized that I really need to pursue this for him. (links at end) I have always believed it is very important for kids to have music in their lives, and some form of music lessons will be insisted on in this house for all of my kids (prefer a few years of piano/keyboard as a base, but I also hope they will choose to play at least one other instrument as well). 

He has always been interested in music, and often messes around on Zach’s keyboard, but I am not sure how to actually teach him music.  My music theory and technique is rusty at best, and I know that the instrument that I am most competent at (flute) would not be a good choice for him.  He was totally taken by the violin/fiddle brought into the preschool class last week, but I don’t know a thing about strings.  Zach plays mostly by ear, and I play by reading.  Zach is a LOT better than I am at the keyboard, but neither of us is at a level where we have any business teaching it.  I haven’t even gotten to the part where I figure out how to pay for lessons once we find somebody, but we will cross that bridge when we come to it.

I think what is getting to me is when I am pursuing services for him, in order to get the services I have to talk about why he needs them, why we can’t just go the typical routes, and generally clear a path for him that he is able to navigate.  It forces me into the role of talking about negatives, deficits, splinter skills (still am annoyed that it is a ’splinter skill’ for an ASD kid, but for everybody else it is a ‘talent’), and generally, talk about my child in a way that seems so alien to me.  I just don’t see him that way, and I hate, hate, hate that other people do.  He is different and quirky, yes, but I mostly see him as my sweet, loving, fun little boy who is just the light of my life.  I hate being put in the position of protecting him from people who can’t deal with people who don’t conform to the ‘norm’.  I hate that people can’t just naturally be decent human beings and treat others with respect and love, but we all know that is, sadly, a rare quality. 

Once I get past some of this paperwork stuff and get back into a more normal routine, I will feel better.  It has to be done, and it sucks, but it is important. 

I pray I can find a good music therapist or somebody who has the ability and compassion to help teach him music.  I really think it would be good for him.

Music for the child on the autism spectrum

Music Therapy and Autism

Music Therapy and Language for the autistic child

Well, I promised more pictures last time and then dropped off the internet for a few days.  lol.  I had a lot of photos, but because I don’t know the parents of the other kids well, I needed to modify the photos so they weren’t identifiable, and that took time that I didn’t seem to find until this evening.  I only have a few mother’s day photos because the batteries died, so they are trapped on my memory card until I actually get the batteries charged again. 

Here are some photos from that bittersweet day

Ready to go

Setting up his visual schedule

Circle time

Planting the flowers in his flower pot.  Zora wanted to help, but mostly contented herself by looking at people and books eventually.

The class photo.  Sitting AND looking the right direction.  Yeah Zane!

This photo is to illustrate how far he has come this year.  A few weeks into school he was still totally losing it when he left the classroom and came into the crowded hallway were the parents met the kids so we had to arrange to have him held in the class for a bit until the hall cleared out.  The last day the hall was jam packed with excited kids, parents, student clinicians, teachers and other various people and he managed.  He wasn’t thrilled through most of it and verbally told daddy he wanted to go to the house to eat an apple, but he was coping and protective of his flowers.

We will all miss this class.  It was a turning point in our lives and the people there are so wonderful to work with. 

I have a bunch of photos to post for today, so I figured I should do a little catch up first.

A few more shots from the ‘peek a boo’ set.

Ever since Zane’s doctor appointment she has been carrying around the play stethescope, although she wears it backwards most of the time.  lol.  (btw, that is a cake pan she is sitting in)  She was talking to herself when I took the picture.

Two nights ago Zane didn’t finish his supper and Zora saw an opportunity.  She climbed up on the chair (thankfully I saw that and stripped off her new dress and pants before she got too messy) and gleefully worked on finishing his spaghetti and meatballs.  (mostly avoiding the meatballs though…I am wondering if she is going to end up a vegetarian because she usually isn’t interested in meat most of the time). 

His last day with the university student speech therapist

Fun in OT yesterday afternoon