In Which Connor Gears Up For Next Year And I'm On The Mend

I can hear Connor singing his little whale song over the monitor right now; it looks like he might be up a while.  He sounds a lot like Dory out of Finding Nemo, only without the actual words part.  It's very cute-- and I can appreciate just how cute it is way more now that somebody else is staying up listening to it at two in the morning. 

The little guy had his IEP this afternoon to talk about the rest of this school year as well as next school year.  He's going to be in a self-contained classroom at a school that's a bit farther away, but the teacher-to-student ratio is amazing and I think the class is going to be fantastic for him.  I've heard nothing but wonderful things about his new teacher-- who we got the chance to meet today-- and he seems like he'll be a great fit for the little guy.  We haven't toured the classroom yet, but already it sounds like they're doing some really, really neat things in there, like a twice-a-week music session, which the little guy will no doubt absolutely love. 

They also have a peer interaction program where typical fifth graders visit the classroom once a week, and since the little guy is the cutest kid in the universe (in my completely unbiased opinion) he'll probably be mobbed by the girls.  I'm predicting he'll have the entire female population of the fifth grade wrapped around his little finger by the end of the first month. 

This will probably be Connor's class until he's in the sixth grade, so I'm excited that it's such a stellar program and I can't wait to see how he'll grow!  We're going to plunge right in and send him full-time, and if that doesn't work out we'll scale back.  I'm always amazed at just how much the little guy can do, so I don't want to make the mistake of underestimating him. 

In other news, after sticking to a super-strict regime of icing, elevating and anti-inflammatories today my knee is looking pretty good.  The swelling has almost completely disappeared and, while it's still tender (especially right around the kneecap) I've got complete range of motion, I'm moving around pretty well and I think once the deep bruising goes down in a few days it will be right as rain.  The icing has done all the good it will at this point and it's not really swollen any more, so tomorrow I'll be switching over to taking long soaking baths to loosen things up.  Like I need an excuse to take long soaking baths.

I'm going to talk with my doctor just to get the all-clear and to look into getting a knee brace since I don't particularly want this to happen again (and apparently it's more likely to reoccur now if I did in fact pop the knee cap out) but I'm optimistic I'll be back on skates soon!

~Jess




   

In Which Connor Has A School Meeting And The Tooth Fairy Has It Easy Around Here

We got off to school about an hour early this morning because Connor and I had an evaluation for services meeting to attend in preparation for him transitioning to full day school next year.  All of his services have to be changed, of course, because he'll be in school for six hours a day instead of two and a half, and he'll be going five days a week instead of four.  We'll have an IEP meeting some time in the next month to make sure everything will be in place for next year. 

In the meantime I plan to be in total denial that my son is going to be in first grade next year, because there is absolutely no way that he's that big, and also because his school program is so fantastic right now and I'd love for him to be in it forever.  Of course I'm sure whatever program we end up in will be fantastic too because Connor's school district is amazing, but that doesn't mean I'm not going to stick my fingers in my ears and yell "La la la la la" every time the subject comes up until next September.

Tomorrow he has a dentist appointment, which should be interesting.  He's got four loose teeth right now, and two of them have been loose since late December of last year and show no indication of falling out any time soon.  So we'll see if they end up wanting to pull those, or if they'll just let nature take its apparently extremely slow and winding course.  Since the little guy doesn't chew, it makes sense that they'd be holding on-- they don't get near the amount of wiggling that they would if he was biting things with them.

Of course he's losing his teeth all out of order, but that's to be expected with this kid, especially as his primary teeth came in all out of order too (and way, way early).  The ones we're really waiting to see are his two upper central incisors (his two top front teeth) because those are the primary teeth that have major enamel issues.  Basically the enamel didn't form on them properly before he was born, either due to his genetic condition or because his kidney shut down while they were forming, and as a result not only are they a lovely pumpkin orange color but they also have an interesting shape to them-- kind of like a cookie with a bite taken out of it. 

Since the permanent teeth form at a different time from the primary teeth, we're hoping that the permanent versions of those teeth will have a stronger coating of enamel and he won't need to have them painted with fluoride every six months for the rest of his life.  We probably won't be finding out any time soon though, because those teeth have only been loose since February so it'll probably be another six months before they fall out.

I'll let you all know how things go!

~Jess
     

In Which We Have A Paperwork Day

Another busy day today-- this one filled with a ton of paperwork and phone calls.  I usually designate at least one day a week to handling all of Connor's appointment booking, insurance calls and forms, and I spent several hours at it today.  The little guy has his annual developmental clinic appointment tomorrow, so I needed to make sure we had all our ducks in a row.  We alternate which clinic we're seen in each year, and this year it's the neuromuscular clinic. 

Though come to think of it, I'm pretty sure we saw the neuromuscular team last year.  Oh well. 

Anyway, he'll have about four hours worth of appointments and he'll be missing a day of school, which unfortunately can't be helped.  Because they have to get the team together, they only schedule these for 8:15 in the morning on Fridays.  So there's no way around it.

So after getting his stuff squared away for that, I scheduled a urology appointment for him and got the ball rolling on his physical therapy outside of school.  We'd dropped our outside therapy because Connor was having such a hard time that we were having to cancel constantly, and when we actually did go he was so dang tired he'd just fall asleep in the middle of the session.  Thankfully he's got a lot more energy now and we have some specific things we'd like to work on, so it's time to add it back in.  All the paperwork is now filled out for that, and I'll drop it by the hospital when we're finished with the developmental clinic appointment.  They are at two separate hospitals, of course.

Oh, and the triage nurse for Connor's nephrologist called to talk to me about scheduling the next blood and urine tests for the little guy's creatinine levels.  She's at hospital number three, but we're trying to stack the blood test with Connor's next seizure level check to reduce the number of times he has to be poked, so the test will probably be at hospital number four.

 I am extremely lucky that I can be a stay-at-home-mom, because I have no idea how the heck I'd manage otherwise.  I'd have to assign the cats to making these phone calls, and then instead of Connor having appointments we'd just end up with large mail-order deliveries of canned tuna. 

Finally there was Connor's IEP reevaluation paperwork, which I need to get turned back in so that we can schedule an appointment to talk about next year.  Connor will be changing schools and starting first grade, the thought of which makes me want to put my fingers in my ears and go LA LA LA LA LA because he can't possibly be that big.  He won't be the only kid transitioning of course, so we need to get it turned in so that they have plenty of time to schedule everyone without having to cram them all in at the end of the year.  Connor has a few different options as far as schools, so we'll be looking things over carefully to figure out which program will be the best fit for him. 

This school year is just flying by!

~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

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

Snake, Snake, It's a Snake!

For the last two years of life, Connor has been completely in love with a fuzzy Cookie Monster doll. "Cookie," who is in his second incarnation as Cookie senior met his demise in a parking lot shortly after we moved here, is a much chewed on, raggedy-but-faithful friend. Sadly, Connor has proved fickle and has now dropped Cookie completely in favor of another, better toy. Poor Cookie.

The usurper is Connor's plaid snake, which we have named "Snake" in our usual creative fashion. One of my really good friends made this for him before he was born, and Snake has hung out in Connor's crib ever since. Suddenly he's discovered it. He likes to hug it, nuzzle it, and on occasion taste it-- the satin tongue is apparently especially yummy. Of course, he did pick the one toy in his crib that's completely impractical to take anywhere, as it's too big for him to carry and we can't exactly stick it in his wheelchair; either it would be hitting me in the chest as it bounced over the top or we'd need a four-foot clearance on either side when we went walking. Oh well: for the foreseeable future, Snake will have to visit with Connor only while he's napping or hanging out on the floor, but that's okay. Maybe he'll stay cleaner longer.

Yesterday was a very full, very exhausting day. We had the IEP meeting that morning, and honestly I'm not really sure yet what to think about it. Jer and I have some very important decisions to make, and there are some big things in the works. I'll let you know more as soon as we decide what we're going to do-- right now everything's up in the air. Jer didn't get home until almost 8:30 at night, so we haven't really had a chance to talk about it.

I made an appointment this morning for Connor in GI. The earliest appointment they had was for May 5th, and I am absolutely not okay with doing another three weeks of Spontaneous Poop Explosions (he blew up twice yesterday: all over our local Panera Bread and a friend's couch), so I called their office directly and will hopefully hear back from one of the GI docs in the next couple of days.

Apparently there are no referrals in for urology and ENT, which are the other appointments I'm supposed to be making, so I'll have to make some more phone calls. I also left a message for the developmental peds clinic-- they were supposed to call before Connor's third birthday to set up his annual appointment with the team, and that hasn't happened either. Rawr.

While I'm waiting for my phone calls to be returned, I'm going to be doing some heavy Spring cleaning. Might as well take my mind off all of the crazy stuff we've got going on. Also the house looks like a tornado went through-- not a likely excuse in the Pacific Northwest.

~Jess

IEP Tomorrow

It was bath day today!

Tomorrow we'll have our third IEP meeting. Jer can't make it, so it'll be little old me, my friend (and Connor's Deaf mentor/respite care worker) and however many people the school has decided to bring this time. I'm sort of nervous about it. Wish us luck.

As an aside note (since apparently I can't make even one post this week without mentioning poop) guess what Connor managed to get all over his hearing aids today?

How? Don't even ask.

~Jess

In Which I Jump About From Topic To Topic With No Transition Whatsoever

We got an e-mail back from the school district about whether or not we're allowed to tape the IEP meetings. They said that they'd agree to have the next one recorded, and they'd bring a tape recorder too. That's totally fine with us. Hopefully the meeting next Wednesday will allow us to resolve our differences over what Connor needs to get an adequate education. I'm really tired of going to meetings.

Connor was much improved this morning; his fever is completely gone, he ate more than he has in weeks, and he seemed pretty chipper. We took him into the doctor's office about eleven, and the poor little guy recieved two more big shots of Rocephin, which he didn't appreciate at all. I'm told that those shots hurt like a son-of-a-gun. The blood cultures were still pending, but we've got another appointment tomorrow and we'll find out what, if anything, showed up then. For Easter Sunday Connor will recieve yet two more shots in his much abused little thighs. Poor guy.

The highlight of the week for me thus far happened when I refilled the hummingbird feeder on Connor's window. I took the feeder off and filled it in the kitchen, and then walked back through the yard to hang it up again. As I rounded the corner of the house, two male Rufous hummingbirds zoomed up to where the feeder normally is, saw me with the feeder in my hand, and actually flew up and perched on the feeder about four inches from my face. They stayed there for about five minutes, periodically launching themselves up off the feeder and zooming in circles around my head while I tried very hard to look like a small pink-barked tree. I discovered that hummingbirds breathe really, really fast. Also they shoot their tiny tongues in and out when they sit up to take a break from eating-- they look like they're licking the last bit of necter off the edges of their beaks. I'd never seen two male Rufous hummingbirds eat from the same feeder before; usually they're the one's trying to drive all the other hummingbirds away. These two just fluffed their feathers at one another and pipped a couple of times, but I guess they were hungry enough that they were willing to temporarily share. After they finally flew off I hung the feeder and then walked into the house in a daze, sporting a giant goofy grin. Now I've taken to walking back to Connor's window with a refilled feeder very, very slowly, in the hopes that it will happen again. My neighbors probably think I'm nuts.

Anyway, an early Happy Easter to everyone!

~Jess

IEP Meeting Take....Never Mind

So we didn't have an IEP meeting.

This is due to the fact that we brought a tape recorder. The school district claimed that the tape recorder violated their privacy and refused to have the meeting if we were taping. We refused to turn the tape off. So we didn't have a meeting.

I just spent over an hour typing up an e-mail message that specifies under which laws and court cases in Washington state we are given the right to tape despite the school officials' non-consent. That was a whole lot of fun, let me tell you. We're supposed to meet with them AGAIN next week. Jer and I have yet to discuss whether we'll be bringing a tape recorder to that meeting, a stenographer, or just saying the heck with it and going straight to mediation.

I'd like to know what the heck they were planning on saying that they didn't want an audio record of.

~Jess

Looming IEP Meeting

I just got back from my sign class, and our son, Saddy the Sadkin, is asleep. He slept about ten hours today, mostly on my chest while I looked up and printed out various portions of state and federal law concerning IEPs and arranged my notes for tomorrow's meeting with the school district. Nothing's really changed; he's still running a low grade fever, still having some seriously nasty diapers, and in a generally crabby mood, but otherwise okay. We didn't hear from the doctor today-- one of the drawbacks of the military hospital. On the one hand, it's probably not important enough for me to page Dr. Adams myself for an immediate call back. On the other hand, this "the doctor will call you some time in the next two business days" stuff really stinks. Oh well. We'll keep dosing him with Tylenol and keep him hydrated in the meantime.

I dropped by the store on the way home from class and picked up a tape recorder and some blank tapes. Well, okay, four stores. Those things are hard to find nowadays. Anyway, we'll be bringing all of this stuff, along with a grumpy and still-sick-but-probably-not-contagious Connor, to our IEP meeting tomorrow. I'm really, really hoping we'll be able to get the school to change their tune, as we have enough things to deal with without throwing mediation and due process onto the list, but if that's what it takes, so be it.

Wish us luck tomorrow-- I'm off to bed.

~Jess

Bad News: IEP Results

So we didn't sign the IEP.

I don't want to get into too many specifics right now, but essentially the IEP confirmed the worse-case scenario I'd hoped we wouldn't get into. We disagreed on some very major points, points important enough that there was absolutely no way we'd be signing the IEP as it is written. Thus we will be going to another meeting in a couple of weeks, and depending on that meeting will be attending mediation and if that doesn't work out, going through due process.

I have to say that I'm really, really disappointed, and actually very angry as well. I had high hopes for this meeting. Connor turns three next week, and he won't be starting school because we couldn't come to an agreement. I'm absolutely not willing to forgo the services that I know Connor needs, and will do everything in my power to assure that he receives those services. All the same, it's very frustrating to know that I'll be starting a long, drawn out process that never should have happened in the first place, and in the meantime Connor will be waiting in limbo for us to hash it all out.

To add insult to injury, Connor's insurance just denied his prescription for Entereal Pediasure, as they say that the diagnoses of his genetic condition, growth restriction, GERD, and failure-to-thrive aren't reason enough to make supplementary feeding necessary. I spent the morning on the phone with the insurance company, and we'll be starting the appeals process with that whole mess, too.

Let's just say it hasn't been the best of days.

~Jess

In Which I Worry Over Nothing And We Torture Our Son With Horrible Things

So we had that school meeting this morning, and they immediately changed Connor's IEP date to next Thursday. No fuss about it at all. That makes me very happy-- guess I got all worked up about it for nothing.

I still have some concerns about what will be offered at the IEP meeting, but I don't want to jump to any conclusions as it hasn't happened yet. I'm hoping I'm just being paranoid; with any luck we'll have a fantastic IEP meeting and Connor will get everything out of it that he needs without any fuss. I guess I subscribe to the "prepare for the worst and hope for the best" philosophy. I'll keep you all posted.

After our school meeting, we met with Connor's Special Education teacher for some sensory play. I thought that the sensory box was filled with Easter grass, but apparently in Connor vision it was filled with huge, venomous snakes. Also possibly broken glass. He reacted as if we were killing him when we made him put his feet in it. Then we made him touch all sorts of things-- things with bumpy parts and squishy parts and, God forbid, sticky parts. Horrors.

We're so mean.

After we were done torturing our son, we drove up to Seattle Children's for his anesthesiology appointment. This went about as it usually does-- they ask us a billion questions related to Connor's heart condition and then have us sign some paperwork. Sounds like we're all set up for Monday's surgery, provided Connor doesn't get sick or something before then. This week is really flying by-- I can't believe Connor's having surgery in five days! It doesn't seem possible.

Tomorrow we're getting up super bright and early to take Jer to work, and then Connor's respite care worker is picking him up and I'm visiting the schools. Then I'm picking up Connor and making preparations for that reception we're throwing tomorrow. Another crazy day in the making!

~Jess

IEP Woes

So we've hit a bit of a snag in our IEP process.

I called our liaison at the school yesterday to let them know that we would be unavailable on the 23rd, 24th, and 25th, because Connor has his surgery on the 23rd and will spend either one or two nights in the hospital. I hadn't yet received any word about Connor's IEP scheduling, but I wanted to make it easy on them, as we could do any other dates in March EXCEPT for those three days.

I received a call back later that evening. Was I absolutely sure that we couldn't do the 25th? Um, yes, I was sure. Well, they only schedule IEPs on Wednesdays, and April 1st was over Spring Break, so they'd just schedule us for April 8th. No problem, right? I told them that the day would work for me, but I'd have to check with his Birth-to-Three therapists as Connor's third birthday is April 1st.

So the last Birth-to-Three therapist called me back today. NONE of them are allowed to come to the IEP meeting if it is after Connor's third birthday. Also technically it's illegal to hold the meeting after Connor's third birthday. I called back and left a voice message for our liaison's office telling them that we really needed the meeting done before April 1st, and that ANY other day in March except those three, including weekends, we could make. I haven't heard back from them yet, but we have an informal meeting up at the school tomorrow morning (with an unspecified number of people to apparently let the IEP team get a better feel for Connor) so I'm sure we'll talk to them about it then.

I guess I could probably just go to the IEP meeting by myself, but the truth is that I'm a little intimidated, especially since I've only met one person from the IEP team (and they had NINE people at the last meeting, so Lord knows how many will be at the actual IEP) and I'd feel better having advocates along that know the law backwards and forwards and sideways and are on board with what we feel would be the goals and accommodations needed for Connor to get an adequate education. I also have kind of gotten the vibe in the last few phone calls from the school that they'll be pushing for Connor to go into the Special Ed classroom instead of the Deaf and HoH class, so it's especially important for us to have someone there from his Family Conversations team as we feel without an interpreter the Special Ed classroom would be entirely inappropriate for him. I don't want to start off the school year by being antagonistic, but I really feel like his team needs to be there and I'm kind of the opinion that, well, the school had three months in which to schedule their IEP meeting, and it's not MY fault they left it until the last possible Wednesday, so what can I do? I don't think I'm being unreasonable by asking for his IEP meeting to happen before his third birthday, though maybe I'm making a mountain out of a molehill by wanting his birth-to-three therapists there. I'm sure they have busy schedules, so I feel kind of guilty. What do you all think? Am I asking too much?

We'll see what the school has to say tomorrow. Wish us luck!

~Jess

Schedule of Doooooooom!!!!

Connor would like to inform everyone that there are many, many ways to recycle. Shoes, for example, when outgrown, can become very fashionable hats. Don't be afraid to accessorize daringly!

Right. Today was the day that my sister and I planned to do a whole lot of outdoor activities. Today was also the day it started raining again. Figures.

Jer and Connor stayed home and had a Daddy Day. My sister and I ended up driving down to one of my favorite little cafes in Tacoma and playing Scrabble for two and a half hours. I got my rear handed to me on a platter. Apparently I'm a little out of practice. Then we drove down to the Tacoma mall and wandered around for a while, observing the bizarre ceremonial dress and mating habits of the local teenagers.

We stopped by the store on the way home, after determining via a phone call to Jeremy that the chicken I had thawing in the refrigerator still bore a closer resemblance to a rock than it did to any sort of bird. I made spaghetti with sausage, and we watched Hook after dinner. Well, my sister and I watched Hook. Jer played World of Warcraft and Connor alternated between playing with his Gertie ball (which he highly adores and I would recommend to anyone with a child who has gross motor issues) and screaming with glee over nothing in particular. I love that little guy.

The next couple of weeks are going to be even crazier than usual. Monday and Tuesday are pretty free other than my sister leaving, sign class, and scheduling a bunch of appointments, but then things go kind of insane. Here's a quick run-down of my to-do list:

Wednesday: Connor's special education teacher comes and we have an appointment with anesthesiology at Children's Seattle. Buy food needed for party on Friday-- the party for 30-50 people I was informed by my husband yesterday that I would be throwing. I love the army.

Thursday: Visit the possible schools Connor might be going to (this will take about 6 hours as I will visit a morning and an afternoon preschool at two different elementary schools). Go get Connor's three year vaccinations and an updated copy of shot record, then comfort screaming, irritable child while making last minute preparations for the next day's party.

Friday: Go to Connor's nutrition appointment. Rush from there to Jer's office to set up for party. Attend army function. Host party. Rush home and frantically begin cleaning for guests that arrive the next day.

Saturday: Run around shoving everything into my closets. Mother-in-law and aunt arrive and pretend not to notice dangerously bulging closet doors and my totally frazzled appearance.

Sunday: Prepare for Connor's surgery, try and cram in as many touristy things as possible, as feel guilty for all activities occurring during relatives' visits. Lie in bed at night thinking about all the ways surgery could possibly go wrong.

Monday: Connor's surgery. Fight with husband over who gets to stay at hospital. Either spend the night on uncomfortable chair in hospital room, or at home on comfortable bed wishing I was on uncomfortable chair in hospital room. Sleep poorly either way.

Tuesday: Recovery from Connor's surgery. Resume touristy things. Possible frantic preparation for IEP meeting, which they won't call us about until the day before it happens.

Wednesday: Possible IEP meeting. Forget everything that I wanted to discuss due to extreme exhaustion. Realize later that have agreed to have invisible gremlins help Connor in classroom, which will be paid in bowls of milk left outside the shoe cupboard. Develop nervous twitch.

Thursday: Have Connor's last meeting with Family Conversations and his Deaf Mentor. Cry.

Friday: Connor's last Family Conversations play group. Cry some more.

Saturday: Mother-in-law and aunt leave. Continue to feel guilty over number of things they are either dragged to or times they are left at completely loose ends.

Sunday: Collapse in exhaustion. Vow to never leave bed again.

So as you can see, we have a busy couple of weeks ahead. If I survive, I may need a bit of a vacation. I'm thinking Bermuda. Think my bed will fit on the plane?

~Jess

Meetings!

The nurses' visit this morning went well-- only two of them instead of three came, and they stayed for about forty-five minutes talking about Connor's medical issues. They determined that Connor falls under the jurisdiction of Washington law RCW 28A.210.320, which deals with children with life-threatening health conditions who are in a school environment. We will need to come up with a health care plan in regards to Connor's seizures and the possibility of stroke or cardiac arrest, and what the school's instructions will be if those events should occur. The nurses will be getting in touch with Connor's doctors to get a better picture of the kind of care plan we need, and we'll get that set up before he starts school.

Overall, our evaluation results meeting also went pretty well!. It lasted just over an hour and counting myself and the two therapists I brought with me, there were eleven people there. I walked out with a twenty-two page evaluation report recommending OT, PT, and ST services for Connor as well as an FM system, and two visits scheduled to visit the special needs classroom and the Deaf and HoH classroom.

I was glad that I brought Patti and Barbara with me, because it was really nice to have a couple of people there that I knew well-- it made me more confident and less intimidated by the number of specialists there. I'm hoping that the IEP meeting will go as well, though I usually go for the "prepare for the worst and hope for the best" attitude when getting ready for these sorts of things.

The coordinator was much warmer, friendlier, and more helpful this meeting, which was really nice. It turns out that she won't actually be attending the IEP meeting, however, which means the Deaf and HoH coordinator will probably be the only one from this group who will be there. Since we don't bring Connor with us to the IEP meeting, this means that the people making the decisions will never have seen him and will be basing the IEP solely on what's on paper and what I can bring to the table. This is a little intimidating, but I really hope that it won't be an issue to get the services necessary for Connor to succeed.

~Jess

Evaluation!

Connor had his evaluation for school this morning. I was pretty worried about it-- I'd had some concerns after our initial transition meeting and so I wasn't sure what to expect. The school was bringing in a psychologist, physical therapist, speech therapist, occupational therapist, Deaf and HoH coordinator, and special education teacher-- none of whom had ever met Connor before-- and the evaluation was taking place in a new environment for him. For a stranger-shy kid who reacts to stressful situations by shutting down and pretending everything around him doesn't exist, this sounds like a recipe for disaster.

You know what? It went really, really well.

I only brought two people with me: Patti, Connor's Family Conversations (his Deaf and HoH program) teacher, and Julie, Connor's ST. While I could have brought the whole gang, I felt like maybe bringing in too many people would make it seem like I was being too antagonistic, so I kept the numbers on our side low. Julie works closely with Connor's PT-- they have overlapping sessions-- so she could help out with describing how he was doing physically as well as with eating and communicating in ways other than sign. Patti could cover the SEE side of the story, and I could fill in the blanks.

I guess I really felt like I needed to bring a couple of people with me because I'm so used to others showing understandable scepticism regarding Connor's abilities. I mean, here's a kid with a two volume medical file that screams PROGNOSIS EXTREMELY DIRE and I'm claiming that not only is he doing more than just breathing, which is all he was expected to do, but he has 41 signs and he's making up short sentences and following simple directions. I was expecting to have to explain this to a group of six people who were watching Connor stare at the wall, so I can't say I would have blamed them if they'd thought I was one of those mothers who thinks their child is a genius and makes stuff up. I wanted somebody else there with a degree and a more objective opinion to say-- "No, he is doing that-- I've seen him," so we didn't end up in a Michigan J. Frog cartoon.

Connor really stepped up to the plate, though. The PT started things off by getting down on the mats with him and really being hands on, which is a fantastic way to break the ice with my child. He loves to be man-handled-- turned upside down, zoomed around the room, lifted high up in the air-- and any person who will do that with him can get him to interact with them pretty quickly. It's something I will have to remember with future evaluations-- maybe if the child psychologist swings him around in the air a few times before they start testing he'll be more likely to actually pay attention.

It ended up breaking up into a really informal hour-long session-- one or two of the therapists would be down on the floor with Connor and either me or Julie or Patti, and the other people would be in groups of two or three talking about what he was doing at home, what adaptive equipment we had and what would be needed, and then after a few minutes we'd sort of rotate by some unspoken signal. Most of the people involved hadn't had a chance to look over Connor's medical file, which ordinarily would have been really annoying but I think in this case actually helped. They were open to the idea that he was doing the things that Patti and Julie and I were saying he was doing because they hadn't read all of the reasons why he shouldn't be doing them.

The fact that Connor did do so extremely well probably didn't hurt anything either. He charmed the pants off of everybody by smiling and giggling a lot, watching everything very closely, and demonstrating a bunch of signs (such as "Potty, please!"). I'd brought a sheet with all of Connor's home signs written down on it as well as a quick one-page medical synopsis. The sheet of signs proved extremely helpful because I could tell the therapists-- "See? He just signed 'potty'" and then they could look down at the sheet and see that what he'd just done and what was on the paper matched. He also showed that he knew about flash cards, demonstrated his "jumping," some of his "love butts," and stood up and sat down on command.

Though it was subtle, there were signs that he wasn't entirely comfortable with the situation. He didn't start making any noise at all until the hour was almost up, which is very unusual for my child-- he's pretty vocal. He also didn't want anything to do with the switch toy I'd brought with me-- a toy that's usually his favorite. He pulled his left hearing aid out maybe nine or ten times over the course of the hour-- something he almost never does-- so I think maybe the noise and activity was getting to him. I was so proud of him though-- he really did a great job!

Unlike the transition meeting, my suggestions were met with enthusiasm instead of "here's why we can't do that." Nobody said anything about the Deaf and HoH school being too far away, or that an aide would be an issue. The PT and OT and I got into a discussion about the different therapists and who would be the best fit for him based on his learning style. The Deaf and HoH coordinator and I had a very good discussion about home signs and how we could modify signs to fit Connor's abilities. The Special Ed teacher and I talked about how the cognitive test really was not appropriate because of Connor's motor skills (and she was the one to bring it up!), and she modified some of the questions accordingly. Strangely enough, the only one that I didn't have a great conversation about Connor with (or really any conversation at all) was the child psychologist/coordinator-- the one who had been at the transition meeting. She kind of stuck to the edges of the room. Maybe she's just really quiet.

Overall, however, things went really well. The other therapists actually asked me at the end of the evaluation if I would consider volunteering in the Deaf and HoH classroom with the other children. Craziness.

We'll have the evaluation results meeting in a few weeks, and hopefully all of this will translate on paper into a great recommendation for services, and ultimately, IEP. I'm just so happy that I can go in with the confidence that we'll be working together as a team and not fighting every step of the way to get the services Connor needs, and I'm much, much more comfortable about the idea of Connor going into this school district than I was before this meeting.

The next step: visiting classrooms. Whoo hoo!

~Jess

First Meeting Heebie Jeebies

So our first meeting with the school district was interesting.

I say interesting because I'm not quite sure what to think of how things went, and I don't want to get too pessimistic before we've met any of the team we'll be working with. Basically we sat down with a coordinator, outlined the things that we wanted to do, set up an meeting for an evaluation, and then signed a piece of paper that said we'd been warm bodies in a room.

The coordinator was very, very nice, but I still came out of the meeting with a sinking feeling. We've outlined two very specific items that we want to walk out of Connor's IEP with and absolutely will not take no for an answer. We've thought about these items for quite some time. We've discussed them with his therapists, special education teacher, and doctor and they all agree with us that we are not asking for unreasonable things and have very, very good reasons for wanting them. They are:

1) Connor needs to be in a Deaf and Hard of Hearing classroom. Ideally we'd like to split his time-- two days a week in the Deaf and HOH classroom, and two days out of the week in the Developmental classroom, but if we have to choose one, we'll choose the Deaf and HoH. Connor has to continue to acquire language, and he needs to do it in an environment where his peers all sign, even if they are learning things a little bit out of his range. We can supplement with physical and speech therapy outside the classroom if necessary, but he can't spend four days out of the week in a classroom where he doesn't understand what everyone is saying.

2) Connor needs to be assigned an aide. We'd ideally like this aide, preferably a nurse aide, to go to SEE classes and learn how to sign. Since he uses a wheelchair that he cannot direct himself, needs help going to the restroom, cannot feed himself, is visually impaired, will have a g-tube, and is at risk for seizures in which he stops breathing, heart failure, and stroke, we feel that someone who is there to help Connor is not too much to ask.

Once we had outlined what we wanted for Connor, the coordinator, who as I said was very nice, began speaking gently to us about "least restrictive environment." She said that having an aide would be the highest level of restrictive environment, and they need to start with the fewest restrictions and work up from there.

After having said this, she then told me that there were only two schools who had an RN and LPN on staff, and the Deaf and HoH preschool was not one of them. Because of Connor's potentially life-threatening issues she believed it would be best for him to go to the one that was only five minutes away from the hospital.

So essentially what she was telling me is that in her opinion, it would be best if Connor went just to the Developmental preschool without an aide.

Now, I have a few problems with this. Okay, I have a lot of problems with this, but I'll just outline the ones that center around the logic she was using to justify this opinion. In my understanding, the concept of least restrictive environment centers around the idea that a child be as included as possible with other children who do not have special needs. Now while the Deaf and HoH classroom does contain mostly children who are Deaf or HoH, it also contains children who are CODAs (Children of Deaf Adults) or have siblings who are Deaf. If Connor can participate in a classroom with typical children provided he has an aide, I would think that this would be a less restrictive environment than putting him in a classroom of only special needs children without an aid and, I might add, without any form of communication.

I would be able to understand the logic behind him needing to be at the school only five minutes away from the hospital if I didn't already know that the Deaf and HoH preschool is only seven minutes away from the exact same hospital.

I didn't go into any of my reasons why I was not happy with the initially expressed opinion at this meeting. I know that the coordinator doesn't actually have any say in what happens to my child at this stage in the game, though she might later as she is also a child psychologist and could potentially be on the evaluation team. I didn't want to get angry and start things off on the wrong foot right from the beginning-- I'd much rather have a great, mutually respectful partnership with the school, so I won't dig my heels in until we get to the meeting where it matters. They might be completely in agreement with me and immediately give us everything we are asking for. That being said, I absolutely will not take no for an answer on these two requests, and I can be very, very stubborn when I need to be.

We'll just have to see. It's just that this seems to me like a warning we may have a fight on our hands.

~Jess

IEP

We have Connor's first IEP meeting this morning.

I know all we're doing is going over paperwork and saying that our son needs an IEP. I know this meeting is not very important.

Doesn't matter. I'm terrified anyway.

I'll let you all know how it goes.

School Worries

So we're just starting to really gear up for Connor's transition to school. I have to admit: I'm totally, completely, NOT READY for him to be in school. I've been in denial for the last few months. Surely my BABY won't be three that soon?

But here we are less then three months away, and suddenly whether I want to or not I have to start getting him ready. It's IEP time.

For those of you who aren't teachers or parents of special needs children, an Individualized Education Program, or IEP, is a contract with a school that outlines the educational goals of the student, any aid, programs, or supports to be provided by the school, and any other accommodations needed. Every special education student is required by law to have one.

Now in Connor's case, we feel that we should do a little something extra for his teacher or teachers. After all, if I was a teacher and received an IEP for a child that included the kind of medical report and evaluation Connor's folder will likely have, I would be very intimidated and a bit at a loss about what to do with the child. I want to let Connor's teachers know what his strengths are and the most effective teaching methods for him without making them defensive or having them feel like I'm overbearing or interfering. I think a friendly, not antagonistic relationship would be the best for all parties involved.

So here's what I'm thinking. I'd like to make a notebook for Connor's teacher. It would be a three ring binder (easily updated) divided it into three main sections: About Connor, Communication, and Medical. Here's what would go in each section:

About Connor:
Personality
Areas of Interests and Favorite Games
Likes And Dislikes
Strengths and Areas of Difficulty

Communication:
Connor's Signs
Vocalizations and Their Causes
Other Methods of Communication (eye-pointing, picture communication, etc)
This section would also include a DVD of as many of Connors signs as we can capture on tape, and me or one of Connor's therapists signing the rest. We'd also try and film some of Connor's games and common behaviors as a resource for the teachers.

Medical:
A brief explanation of Connor's medical issues in layman's terms
How these issues will affect Connor in the classroom
Medications Connor is taking
Special Dietary Issues and Allergies
Emergency Contact Guide
Emergency procedures in the event Connor has his g-tube pulled out, has a seizure, goes into heart failure, etc.
Instructions for all of Connor's equipment-- hearing aids, FM system, wheelchair, g-tube, oxygen, etc.

So I'm kind of wondering whether or not this is really a good idea or would be useful to a teacher, or if it would be totally overbearing. Some of this info will probably be in the IEP-- I figured it might be a little easier to wade through if it was organized like this, though. What do you all think? Am I being silly?

~Jessie