IHF- Hey, Girl

For this month's photo challenge I am submitting a self-portrait.
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I've been absent from this blog for a while.  I haven't felt like I've had much to say.

I know I have a couple of things to catch up on.  First of all, Target never sent me the car seat they were supposed to.  And I don't think they ever intended to.  A little internet searching brought up many, many complains about their online ordering system.  I bought the car seat for a great price, they said it "shipped", UPS never got it, they cancelled the order on their end (after like a month or more).  Meanwhile, the car seat took a HUGE price jump.  They weren't out of stock.  They wouldn't send me one (despite having paid for it) and expected me to order it again for about forty bucks more.  Yeah, right.

Also, my MRI came back normal, which makes 2012 my most expensive and least romantic Valentine's day, ever.  Of course, Husband uses this as ammo to hold over my head.  I have a slight headache?  Maybe I should just go see six doctors for that.  I feel like I should have been happier about the news, but in the back of my mind I have still been saying, "What?"  I'm trying to turn that into, "Whatever."  If nothing is wrong, great.  If something is happening that's not showing up yet, it most likely will eventually.  I happen to have just found out that someone I know has been diagnosed with MS after over five years of being monitored for it.  That is really not uncommon.  I don't think my husband understands that and he totally just thinks I'm dramatic. Whatever.  If it was a fluke, cool.  If it was something more, I'll know, even if not today.  I mean that's how I hope it will go.  The thing that sucks about Lyme disease is that you have symptoms of everything, and a diagnosis of nothing.  Physicians can't even agree that you have symptoms of Lyme after an initial *cough*inadequate*cough* treatment.  I have been on four rounds of antibiotics for my latest infection (which was last summer).  And I've had two infections.  I hate Lyme. I also hate when it's called Lymes.   I also hate a-hole doctors who expect you to plan your pain three months in advance, because apparently recalling it from memory doesn't do them any good.

Maybe I should have been more present around here for Autism Awareness Month.  Or Autism Acceptance Month, if that's your thing.  (I do prefer the latter.)  Either way, this month it just didn't spark anything in me.  I did make some icons for facebook and some timeline covers that I know a couple people I'm friends with used.  For a while I was just upset.  I wanted to point out that I would love if  "Autism Awareness Month" meant that someone called me and offered to take my kid off my hands for a couple of hours.  Or countless other things that could really give someone a glimpse of what it's like behind closed doors, 24/7.  Instead of just  waving a color, a light, a pattern and saying they care.  Ultimately, I think, I just had an issue with my kid's face being the face of autism.  I don't want my kid to be a poster child for it.  I want people to see the whole him.  I want people to see beyond the autism.  All this fighting I've done to get people to SEE the autism!  I guess I'd just had enough.  Not to mention, we live it every single day.  Excuse me for being a little burnt out of educating people.  I had a great idea for a project but I have yet to even start it.  It involved pictures being put together to make an entire video.  I guess I can't say that I haven't started, because I did type out some of the ideas for what I wanted pictures of.  Just haven't been able to find the right moments to take those pictures.

But today... today was a good day.  We had to go an hour away to have some testing done for the ABA program Q will be starting next week.  This program is the culmination of three years' worth of fighting.  Fighting for an early diagnosis.  Fighting the county for eligibility.  Jumping through hoops and being denied.  Jumping through more hoops and waiting, waiting, waiting.  Finally, word is that our insurance covers it after all.  So that buys us an extra few months.  He will be covered by the waiver in January (unless at some point this year he loses eligibility).   We were on the road before it was even 8:30 am.  Our appointment was 10am to 1pm.  We picked up my mom since Travis couldn't come and it's nice to have whatever family we can get involved.  Stopped at the gas station to grab some breakfast.  Hit the road and made it right on time.  He started out strong with matching shapes made with blocks.  He struggled a little at the end and didn't match up some of the more complicated patterns.  I think he could have, with enough time, but it's as much about attention as it is ability.  He got short play breaks in between types of tests.  It was so wonderful to watch his process.  He worked hard to get everything right, and you could see his face beaming with pride as soon as he figured it out.  Ear-to-ear grins made it seem like it wasn't taking the hours that it actually was. Toward the end of it all, he was tired.  We were there almost the full three hours.  He answered a lot of questions, and honestly surprised the hell outta me.  He also struggles to answer a lot of questions.  He could not answer, "What shines in the night sky?" even though the MOON is one of his biggest obsessions loves.   He calls everyone a he and he doesn't know what first or last mean.  He is good at responding to questions he does know with full sentences (I love school for that).  The best feeling is when you don't expect him to know the answer and he does.  (Why don't I know my kid better?)

I don't know if I'm really ready for this.  I've been waiting for it for so long, but it's going to be a big change. So.  Much.  Time.  The thing is, the state funds intensive autism therapy.  This means that there needs to be a minimum of 25 hours of one-on-one therapy per week.  This means that any time there are two therapists, say, one is being trained, or for the weekly meetings, that does not count as one-on-one.  Which means there will be 25-30 hours of dedicated time for this therapy.  PLUS all the time we will spend doing it with him ourselves. Plus he has school to schedule around.  Six hours a week now, none over summer, and twelve beginning next fall.  He's got a pretty full plate.  But you know what?  It shows.  Today, he has just blown me away.  Sometimes I don't notice things for a while.  Apparently it's been under my radar that he's saying things that aren't scripted, rote, memorized.  I think. Yesterday, right before he fell asleep, he told me that our dog was going to be eaten.  This confused me.  He said Cookie Monster was going to come eat our dog.  This terrified me.  Why was my little boy imagining a monster (even a cute, fluffy one) eating our family pet?  He mumbled something about Cookie Monster eating letters.  I'm not sure the context of the letter eating, I'm actually pretty sure it's from a Wii game, but somehow he generalized that to our dog.  Tonight he was sitting here telling me that he was going to catch the moon.  I asked him what he was going to catch it with.  Don't think he knew what I meant, so I gave him two options.  I asked if it was going to be with a fishing pole or a butterfly net.  He told me butterfly net.  But he went on and on.  He told me all about how he was going to get the moon in his net, how the moon was big, but if he cought a "sliver moon" it would be smaller.  He talked about the moon coming down and how it would roll around really fast.  We talked about how a sliver moon wouldn't roll, it would just teeter-totter back and forth.  Then he demonstrated catching the moon in a net, what it would sound like coming down, and showed me (with his hand) the moon rolling around.  He talked about hearing wolves howling at the moon, which tipped me off that it might not be completely something he came up with.  Maybe it did come from something.  But I still just love to hear what his brain thinks about.  He even tells me jokes.  Every day he has school I ask him what snack he ate that day.  It's something that I know will be a reliable answer and not just something memorized.  So this particular day he tells me they ate cake and milk.  I asked him whose birthday it was.  I asked him multiple ways to try to get him to understand me, but he didn't.  I asked him if it was his own birthday again (it was just in February).  Then I dramatically told him no and laughed.  Then I asked him again whose birthday it was.  He told me it was Kai-Lan's birthday.  Which he then looked at me and said, "Nooooo."  Just as I had said it.  He was being funny.  He never did tell me whose birthday it actually was.

I've already forgotten so many great things about today, just because my brain sucks.  I never want to forget what it's like for him to just talk to me.  I don't want to forget what he talks about, how he puts it together, his actions that make the story complete.  I have to update this damn blog more.

Happiness (IHF)

This month's IHF photo theme is happiness.

Today, Q got a new Wii game in the mail.

He only has one other game that he's had for a while but only recently became interested in playing.  This game is a kid's version of a fitness game.  While he doesn't need a video game to work out to, the activity level is an awesome way for him to release energy.  Today was a day of housework and it didn't leave any time for me to take him outside to play.  Instead of getting into trouble from being too cooped up, he had the perfect thing to keep him active and occupied.  Oh, and he loves it, too.

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I Heart Faces- Beautiful Black and White

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This made me want to cry.

My son brought home his first-ever birthday party invitation from school this week.  I'm sure that this boy's parents gave them out to each child, but still.  It made me tear up.  We can't make it that day because we have another birthday party to attend, so I can't say that he'll be going to the first birthday party of his classmate's that he was invited to.  I still think this is a big deal and it reminds me just how much I like Q's school district.  The kids are so nice and helpful while he is in school.  I don't want him to be the weird kid in school.  I want him to be accepted and have lasting friendships.

This Saturday is Q's birthday.  We aren't having a specific party for him but this week we are getting together with my family, and the week after we are getting together with my husband's family to eat and have Q open some presents.  I picked out a Sesame Street book of stories, a book about the moon, the blue Angry Bird (the only one he doesn't have), and a Lego set.

Next week at school he gets to be the "kid of the week" so we are working on a poster of his favorite things and get to pick out some pictures to display.  He also gets to bring something for show-and-tell each day he has school but I'm not sure about that.  If I let him bring something he really likes, like an angry bird, he will probably fixate on that and possibly have meltdowns.  If I pick something that he's not that interested in, it won't motivate him to say much about it.  One area that was really stressed at his recent IEP was interaction with the other kids in his class.  Not to mention his speech doesn't really sound natural.  Maybe I'm over thinking it.  I could just give his teacher a call and see what she says!