In Which I Get No Sleep And We See A Parade

Last night Connor woke up at 11:00pm and stayed up until 5:30 in the morning, so I wasn't exactly coherent most of the day.  I did get a bit of sleep as he didn't wake up again until 9:00am, but I was still pretty spacey.  I took the kids over to my parents' house in the afternoon and took a long nap, which turned out to be a pretty good idea. 

It's currently past 1:00am and the little guy shows no signs of sleeping any time soon, so we may be pulling another all nighter.  I suspect he may be cutting a couple of molars, and that may be the problem-- he's been stuffing a lot of things in his mouth lately, which is unusual for him.

So needless to say we didn't do much this morning, but after my nap this afternoon the kids and I headed over to the Santa parade downtown.  It took us quite a while to find handicapped parking, but we finally found a spot and walked over to the very start of the parade, where we found a good spot on a corner.  Both the kids were fascinated by all the floats lit up with Christmas lights, and Eden couldn't believe that everyone was passing out candy.  "It's like Halloween!" she said in delight. 

We also saw a couple of kids in wheelchairs playing in the high school bands.  When Eden first came, we told her that if she wanted to learn an instrument and play in the marching band she could, but she didn't believe that people with disabilities would be allowed to play in public with everyone else.  So she was really, really excited to find out that we were telling her the truth.  I was very glad she got the chance to see them and confirm once again that there are opportunities out there for people with disabilities, but it made me a little sad too to see just how surprised she was about it. 

So overall the parade was a success, but we had to leave early because it was so darn cold outside; it was in the teens and still dropping when we got back to the van, and even with a bajillion blankets, hats, scarves and gloves they both were getting way too cold.  So we headed back early, ordered some pizza and got ready for bed in the (as it turns out overly optimistic) hope that Connor would sleep.

Oh well. 

~Jess

In Which We Go Out To Dinner And Have A Pretty Great TIme

Jer, Connor and I all went out to dinner tonight at our favorite Greek restaurant, where Connor cooed over the avegolemono (a tasty Greek-style chicken soup) and Jer and I enjoyed stuffing our faces with the aforementioned soup, lamb shank and American-style saganaki.

Saganaki, for those of you not familiar with it, is pan-seared cheese, which is exceedingly tasty.  American-style saganaki takes the dish up one notch on the dramatic scale.  Basically you take cheese, already one of the world's most delectable foods, and you set it on fire, which instantly makes it 8,000 times more awesome.  You yell "Opa!" while you are doing this.  I have no idea what "opa" means since I don't speak Greek, but I assume it's something along the lines of: "Hey, were you aware of the fact that this cheese is on fire?  Because it totally is."  Then you eat it with ridiculously tasty pita bread warm from the oven, or at least you do if you are at our favorite Greek restaurant.  I do recommend that you wait until it's not on fire any more before you dig in, though.  Unless you have something against eyebrows.

Anyway, so we haven't been out to dinner as a family in quite a while and it was pretty refreshing.  Connor did extremely well in the restaurant, and we didn't feel rushed or like we were ruining the other diner's meal with our shrieking little banshee.  Of course it probably helped that we went to dinner pretty early-- just after five-- and it was a Thursday night, so practically no one was there.  Connor does much better with a quiet, calm atmosphere in restaurants.  Also the little guy is familiar with the restaurant and the owners adore him, so he was on his best behavior.

One of the fantastic things about living in this town is we've been able to really get to know a lot of the people who work in our frequent haunts, and they're extremely tolerant of our family's quirks.  Oftentimes the people in our favorite stores and restaurants go out of their way to make us feel welcome, and not only do they love having Connor come in, they're actually disappointed when I don't bring him with me, probably because he is way, way more adorable than I am. 

I'm so glad we live here!

~Jess

In Which We Meet With Connor's School District, And The Cannibal Rodent Strikes Again

We had a meeting this morning with Connor's school district in preparation for the upcoming year, and once again I walked out of it convinced our move to Puyallup was the best decision ever.  The meeting was fantastic; basically everyone there was concerned with making Connor's school year as safe and productive as possible.  There were some personnel changes this year, so it gave people a chance to meet Connor, ask us questions about his health and development, and talk about appropriate training and precautions for managing his medical care in the upcoming year.  Everyone was extremely nice, and we walked out feeling comfortable and confident that Connor will be in the best of hands. 

Seriously, the only way this town could get more perfect for us is if it contained a 24 hour chocolate store.  They could open it up next to that used bookstore downtown.  Chocolate makes everything better.

Um, anyway, so the meeting went really well and hopefully (provided I can get a doctor signature on one more medication form) he'll start up next Thursday with the same awesome team he had last year.  I can't wait!

On a completely unrelated note, remember our cannibalistic gerbil, Lili and the horrific events of last March?  And remember how we decided to get another victim friend for Lili because he was sinking into gerbil depression?  Well, Lili and his new pal, who we named Cranston (for Lamont Cranston-- yet another obscure and weird reference no one is likely to get) have been getting along like a house on fire, once they stopped that whole trying-to-fight-to-the-death business.  I've still kept an eye on them, though, because Teke and Lili got along pretty well too before Teke became the Special Of The Day. 

So last week when I walked in fairly late in the afternoon to get Connor up from his nap I did my customary once over of the gerbil cage, which I can see as soon as I walk into the room.  To my horror I saw Lili stretched out on his back in a corner of the cage, eyes closed and paws extended, with Cranston perched on top of his chest, his muzzle buried in the fur on Lili's belly.

"Nooooooo" I said, (it's best if you picture this in slow motion), lunging towards the tank with my arms outstretched.  Convinced I was seeing Lili meeting a gruesome (but rather fitting, considering) end, I jerked off the top of the tank with the idea that I might possibly be able to save him if I got him to a vet right away and it wasn't Too Late.  Cringing in anticipation of what I would find, I stared down into the cage to see how bad the damage was.

Both gerbils gazed up at me in puzzlement for a minute, and then went back to grooming each other.

Whoops.

~Jess

In Which Connor Has An IEP Meeting

We had a much better day today!

Thanks to Connor actually getting food (and therefore sleep) last night, he was in a much better mood today.  He came home from school, took his nap and ate some lunch, and then we were off to his IEP meeting for the year, which went just swimmingly.  No problems at all; the school district actually increased the amount of therapy they're giving him per week without any prompting on our part, and they retained all of his current services, including his one-on-one paraeducator/interpreter.  Everyone raved about how much they enjoy working with Connor, and it was pretty obvious they were all enthusiastic about what they do and genuinely want to make sure that he succeeds.

Have I mentioned that I love our school district?  Because I love our school district.  Connor's teacher is amazing, the paraeducators are amazing, the therapists are amazing, the support staff is amazing, the administration is amazing-- need I go on?  Seriously, if you are shopping around for towns in the Pacific Northwest and you have a child with any special needs at all, Puyallup should be at the top of your list.

I'm so glad we moved.

~Jess

In Which Connor Feels Under The Weather

Jeremy's been feeling a little poorly for the last couple of days; we originally thought it was something he ate, but changed our minds and concluded it might be a stomach bug when Connor started getting progressively crabbier this afternoon.  By evening the little guy was throwing most of his food up, and he went to bed super early.  So we'll have to see how he feels tomorrow, but the odds are pretty good he's getting sick.  Hopefully my parents won't catch it before they leave-- it's always miserable to be sick on a plane (not to mention the fact that you're "sharing" with all of the other passengers) but it's particularly miserable to be sick with a stomach bug on a plane.  Particularly if there's turbulence.

Everybody other than Connor and Jer had a pretty good day, though.  It was absolutely beautiful outside, and we got a ton of yard work done-- especially since our neighbors (who are awesome) not only offered to take all our yard waste to the landfill for us, but they ripped out a couple of dead bushes for me and, best of all, about fifteen more feet of my ivy!  Then they loaded it all in their truck and hauled it off for us.  Now those are some great neighbors. 

I'm telling you, we live in the best town ever.

~Jess

In Which We Go Shopping And Have A Random Encounter of Awesomeness

Today my mother-in-law and I left Connor with Jeremy and spent eight hours out looking for patio furniture: a housewarming gift from Jer's parents and several other relatives.  We're big on comparison shopping around here.

We finally cobbled together the perfect set with selections from three different stores, and the results are lovely!  I'm sure we'll get a lot of enjoyment out of them this summer.  When we were finished picking up the last piece we stopped by Caffe Adamo, one of Jer's and my many, many coffee shop hangouts, to rest our understandably weary legs.  We were sipping our yummy drinks and chatting about our shopping trip when Mom noticed that the people behind us were using sign language.  A young couple and an older man had come in separately and were having a conversation about signing classes in the area.  I introduced myself and my mother-in-law, and the five of us proceeded to exchange pleasantries in a mix of ASL, SEE and PSE.

That's when the barista came out from behind the counter and started signing.

What are the odds of four different groups of people in a coffee shop independently of one another all knowing sign language-- especially since only two of them were Deaf?   It's the frequency of encounters like this makes me sure we're living in the right town.  One of the guys we talked to works at the YMCA that we visit all the time.  This brings the number of people we've met in the past year who know either ASL or SEE and live in the Puyallup area to seventeen, and these are random encounters--we haven't even attended a Deaf coffee night! 

What a great day in a great town!

~Jess

In Which We Have A Good Veterans Day

Happy Veterans Day, everyone!

Jeremy says "Thank you for your well wishes and support." I tried to get him to do the writing for today, but he told me that was all he had to say and it would make a very short blog post. So you're stuck with me, instead. Sorry.

We had a nice, quiet day-- after some errand running and a visit from the home health nurse in the morning, we took off for Bradley Park. It's the local wheelchair accessible park in town, and in addition to having a fully accessible playground it has a number of wide, paved wheelchair friendly trails. Jer and Connor and I all went for a stroll.

It's amazing to see how far Jer has progressed since he first arrived home. The last time we went down the trail was about a month ago, and Jer had to stop six or seven times to rest. About a third of the way in we had to turn around and go back. This time he did the whole trail without stopping, and on the downslopes I had to practically jog to keep up with him!

I had to keep Connor lined up next to Jeremy or he would start yelling. This is because he has discovered the little front wheels on Jer's wheelchair. Apparently they are hilarious. He spent the entire time staring at Jer's left front wheel and giggling, and so if I fell back too far and he couldn't see them he made his displeasure known until I moved him back into the proper position. Connor's laughter is very contagious, so it made for an amusing walk. Glad to see that he's not too upset about the whole "Daddy in a wheelchair" thing.

It was pretty cold when we were finished with our walk, but we can't leave the playground without going on the swing. Connor got increasingly excited as we approached; he knows that he always gets swing time before we leave. Jer took some pictures while I pushed him on the swing. Isn't he a cutie?

A couple of women walking past stopped to watch us play. Connor was giggling up a storm, and Jer and I were both signing to him and laughing. "See?" one of them said loudly to the other. "They have special places for those people to go around here. But they're terribly expensive to build." The other woman nodded in agreement. "It's nice, though." Then they continued on their way. I'm not sure exactly how someone could look at our happy little family and refer to us as those people, but we were having a good time and weren't about to let them spoil our day. We just ignored them.

After our playground adventure we drove over to Applebee's, which was having a Veterans Eat Free special, but it was packed and we didn't feel like braving the crowd, so instead we went to a little hole-in-the-wall Thai restaurant, where Connor tried to eat half of my curry. The kid really likes Massaman curry. I like it with a bit of a kick to it, so he always makes a scrunched-up face when the spice hits him, and then he immediately asks for more. This is the kid that will suck on raw limes, so I can't say I'm surprised. He likes his flavors strong.

Then it was off to our usual haunt: the bookstore. Yes, I know I went yesterday. But I'm already down to one book, so I needed another. Yes, I know I read way, way too fast. Oh well. Jer didn't get anything, but he indulged me by feeding my book addiction. We went home and spent the rest of the evening curled up reading and drinking copious amounts of hot cocoa and tea.

So overall it was a great day. I'm glad Jer was here to spend it with me.

I'm so lucky.

~Jess

In Which We Might Have Found The House

Connor looked quite a bit better this morning, though his tummy apparently does not like Benadryl-- he threw up several meals today. I have to say that I prefer an upset tummy to facial swelling though, so we'll stick with it until he no longer looks like a red and white Dalmatian.

In other news, we think we've found the house. And when I say the house, I mean the house.

In addition to calling every property manager in a thirty mile radius of Puyallup, I've been browsing craigslist ads religiously twice a day. About a dozen properties in the last two weeks have looked or sounded promising enough to tour, all of which have been a disappointment. If it's built after about 1985 in this region, it's usually two story, which won't work for us. If it's built before 1985, the bathrooms and the doors are two small for a wheelchair. If it's advertised as being wheelchair accessible or with no stairs, it's in one of the two 55+ communities around here. On repeated occasions I've gotten all excited about a property for rent with WHEELCHAIR RAMP in the ad, opened it up, and sure enough, it would be in Canyon Meadows or Enchanted Firs. Those darn elitist geriatric tricksters-- always getting my hopes up only to dash them at the last minute!

Anyway, about a week ago I looked at the properties for sale instead of for rent on a whim, and there it was. A three bedroom rambler in the Puyallup school district sitting on over an acre of land, with those golden words, "Wheelchair Accessible" halfway down the page. Not only are large portions of the house tiled instead of carpeted (which means Jer can stop spinning his wheels on turns) but it also has a roll-in shower and, wonder of wonders, an accessible toilet. The refrigerator is placed where he could open it. One of the three bedrooms is tiled and would make a perfect bedroom/therapy room for Connor, and there's a jacuzzi tub in one of the other bathrooms that I could see myself spending significant time getting to know.

True, the house has some features that are rather interesting-- a brick barbecue with chimney built into the kitchen that's currently holding a microwave, the back wall of one bathroom made entirely out of huge chunks of black lava rock, two separate fireplaces that share a chimney-- one of which is electric and the other propane. But the rest of it does more than make up for its quirks.

So we sat down and took a look at our finances, and discovered that since we didn't have to buy the wheelchair accessible van we could afford to purchase the home. We found a real estate agent, toured the house (Well, the agent and I toured it. Jer's seen pictures. This should be corrected after we pick up the van), and first thing tomorrow we'll be putting in an offer. Keep your fingers crossed!

It's certainly not the end of the world if our offer isn't accepted, or it is and then the inspector finds a huge coconut crab infestation in the attic or something; we'd find another place to rent or buy eventually. But it's hard to imagine that we'd find a place quite as perfect as this one-- no bathroom conversions or door widening-- all we'd have to do is put in a ramp. It used to have one, but it was disassembled just before the house went on the market.

Can you imagine the gardening I could do with an acre backyard? My fingers are twitching in anticipation. And the house has a fifty foot high black cherry tree back there. I half suspect this house was built specifically with us in mind.

If we get the house, I will bake you all a pie. You've got until next summer to figure out how I can put three hundred cherry pies in the mail.

Maybe I'll just post a picture.

~Jess

Library Storytime In Sign!

Tomorrow, Connor and I will be heading down to the Puyallup Public Library for our first Toddler Treasures Summer Storytime session. We'll sit and listen to a book being read, learn rhymes and songs, and do a craft. I thought it would be a really great activity for Connor (especially because it involves books, and you know how I feel about books) and that it would help continue to prepare him for preschool.

That's not the really cool thing about these sessions, though.

The really cool thing is that not only are they going to let me come in an hour early and meet with the children's librarian so that I can go over the book and song selection for the day to make sure I can sign it for Connor, but they plan to hire a SEE interpreter just so he can participate in storytime.

All I had to do was ask.

Actually, I just asked for the time to go over the book and if they would wear his FM system. They offered the interpreter entirely on their own. It took me a visit and a couple of phone calls to track down the right person to talk to, but once I got a hold of the children's librarian it was smooth sailing from there. She said it might take them a few weeks to find someone, but that once they do they'd keep them on as long as Connor wanted to participate in the story times.

I've been amazed time and time again by the lengths people will go to in order to make sure Connor is included as long as I work up the courage to let them know what he needs. Sometimes I have to force myself to do it, because my pride gets in the way or I don't feel right asking for special treatment-- I just have to remember it's for Connor's benefit and not my convenience and then I feel better about asking. Results like these remind me why I do it! This is a totally free program the library offers, and they're doing this entirely on their own merit. What a great library-- yet another affirmation that moving was the right choice for us.

I'd say my mood right now is somewhere around dazed glee. Bring on the stories!

~Jess

Best. IEP. Ever.

So remember that whole IEP drama thing where we decided to uproot and move to an entirely new town in the hopes of finding a school district that would give Connor what he needed?

Yeah. Totally worth it.

We had Connor's IEP meeting today with the Puyallup school district, and not only were they friendly, courteous and completely unhostile (unlike our previous district) but they went above and beyond to make sure that all of his needs are being met. Connor will have a paraeducator who knows sign language assigned to him during classroom hours. He'll have a PT, OT, ST, and an audiologist working with him as well. They'll provide adaptive furniture and an FM system. They identified him as qualifying for services and wrote goals for social/emotional/adaptive, cognitive, communication, fine motor, gross motor, and sensory issues. He'll be in a special needs classroom that will have an awesome adult-to-student ratio-- this past year there were eight students in one class and nine in the other with the teacher and three paraeducators. The teacher seemed fantastic, the administrators were great, and everyone seemed excited about working with Connor in the upcoming school year. Nobody acted like we were asking for something completely irrational or inappropriate-- we didn't even have to bring it up, as they already had the aide written in on the IEP! The document ended up being over thirty pages long, and we're confident they covered all the bases. Not only that, but they're okay with adding other services as needed.

We'll continue to stay in contact with the teacher and the therapists over the break, and Connor will start school up in the fall. This meeting has taken a huge weight off my shoulders and made Jer and I confident that we made the right decision. We're going to meet again in the fall and make adjustments to Connor's IEP as need be, and it sounds like they're willing to meet whenever we feel like it needs revision. What a huge difference from our last IEP meeting! This is a good thing, too, because now I won't have to homeschool. I love Connor dearly and I'd do it if I needed to (I even set his room up with that in mind), but homeschooling wouldn't exactly help Connor's trust issues with other adults, now would it? Also that two hour stretch of alone time four days a week is starting to look really good.

I think if we had to do it over again, we'd make the same decision in a heartbeat. Now Jeremy doesn't have to worry about the education that Connor's getting while he's gone. I'm so glad we chose to be proactive and make a decision that may have been difficult for us in the short term, but so much better for Connor in the long term.

Now we just have to wait for school to start!

~Jess

IEP Resolution: Big Announcement!

So as you all know, we've been "discussing" (i.e. fighting) with our local school district for over a month now concerning Connor's IEP. Basically, they want to put him in a special needs classroom with therapy and an FM system, but no interpreter and no aide. They will write down that they'll give him "access" to sign language and assistance during classroom hours, but won't specify what that entails on the IEP. Thus, it could be five minutes. It could be a video. It could be just about anything. They said they'd put an aide/signer in the classroom, but that wouldn't be on the official IEP, which means it could be taken away at any time with no consequences for the school.

We are totally, 100%, not okay with putting our sign dependent, non-verbal, visually impaired, HoH, severely gross and fine motor delayed child with non-functional opposable thumbs who is in an assistant-propelled wheelchair in a classroom with that kind of IEP. Now we know without a doubt that we could go to due process over this thing and win, but then we still have to deal with the school district for the next eighteen years, and since Connor's conditions are so complicated and constantly changing, we know that we'll be dealing with them more than once a year as we'll have to update his IEP pretty often. What it came down to was whether or not we believed that Connor was going to receive an adequate education in this school system without constant vigilance and fighting on our part, and the answer we came up with was no.

So we're moving.

We found an apartment in a little town nearby that bears the tongue-twisting name of Puyallup. That's "pew-WALL-up" for those non-Washingtonians. Puyallup has a stellar reputation for special needs education, and is especially known for its Deaf and HoH program. We're giving up our on-post housing, quick work commute, excellent security, and really really close hospital, but if Connor can be at a school where we have a good relationship with the district and he's getting the help he needs, it will be worth it. It's true that we don't have any guarantees that this school district will be any better, but it's very, very hard to see how it could possibly be any worse. And in the unlikely event that this school district doesn't work out, well, we've moved once, and we can do it again.

We took official possession of our apartment today (that's our new living room in the photo), but we're putting in our thirty-day notice for our house on Monday. That way we have a month to move in. Now that we have an official address in Puyallup, we can also start over in getting Connor registered for school next week. In the meantime, we have to figure out whether or not we're going to file a complaint with the Office of The Superintendent of Public Instruction anyway-- we're pretty mad about the way Connor was treated, and we hate to think they could do this to another family.

So here's to starting over again. On to brighter horizons!

~Jess