The Long & Winding Day

Do you ever just have one of those days?

I don't even mean one of those argh-why-did-you-wait-

until-I-took-the-diaper-off-before-you-peed days either (although Georgia DID do that); or even  one of those days where the MINUTE you take the wet sheets off the bed, change them, change her, put her in for nap, turn around, think about going the bathroom (for the first time since 6am) and then the phone rings with the call you've been waiting for from the optometrist just as the baby wakes up from his nap kind of days (although you can probably guess that all that has been happening today too). I don't even mean the kind of day where you have a 9am doctor's appointment and an 11am OT appointment. No, because while that was the kind of day we had today, I am beginning to feel like a bit of a seasoned pro (well, sort of) at double booked days even WITH two kids finally.

No despite all that stuff, my day is feeling like one of those days because there is just TOO MUCH in my brain. Too much stuff I am trying to process and remember and take care of and think about.

Rainer's 2 month appointment this morning: he gained 2 lbs 2 ounces for a whopping 13 lbs 6oz, had the shots, was a trooper, looks healthy and strong and is "very social," definitely seems to have a milk allergy though no formal testing will be done at this time (other than the testing we've done on our own which has led us to this thought), is going off reflux meds, while I am off dairy [and yeah, all that milk I diligently pumped? Everything from before Christmas is contaminated and has to be discarded], he's going to start a vitamin, is in the 95th for height and weight, only the 50th for head size (kinda' funny), will need to transition out of the bassinet (due to his weight) in the not-too-distant future (which I am not a huge fan of considering that now all I have to do is roll over, grab him, feed him, drop him off (or keep him in bed with me if Alex is gone to work)), and all in all, the usual. Once we check our smoke detectors (like the pedi reminded us) and install carbon monoxide detectors (which she strongly suggested), we'll be golden. Which is good. Great even. Who could ask for more? A healthy growing child is a wonderful thing.

I even ran into the gal I met at the bookstore who was also in for her daughter's two-month visit. Turns out we have the same pedi! She had actually called me over the weekend to see about getting together this week for a playdate "and to introduce me to a few people" which was really nice because I suppose I was putting off calling for no good reason other than being shy or...something. Busy, I guess. And sick. We've all been sick for far too long. Poor Georgia is the worst now. But she's getting better.

.......................

You know. I've stopped writing at least twice now, tending to Rainer who is feeling a bit sensitive after his shots today and before I go further I want to say that I don't mean to gloss over how grateful I am to have had an uneventful well-kid check-up. I know it is a gift. I know that while it has its difficulties and while I AM concerned about what this dairy allergy will mean for Rainer in the long run, in the grand scheme of things it's not that big of a deal. It's not one of those allergies that can cause a fatal reaction. It's more of a nuisance than anything else.

I also don't want to make it seem like I am not in awe of Rainer. I feel like I have to downplay his accomplishments a little for my sake as Georgia's mom, for the sake of other moms with kids who take a little longer, for Georgia's sake. But I AM in awe and I am proud too. He pulls to stand! He's 9 weeks and he pulls to stand. That is just insane. And we are not pushing him really at all! He does these things on his own. I want to make sure that I allow myself the room to be proud of him although it DOES give me pause. He needs to know that we think he is as much of a rock star as his sister.

And speaking of his sister. During these tending-to-Rainer breaks I took while writing this post and looking ahead to where it is going, I also don't want to make it sound like Georgia is Rainer's polar opposite. Yes, we have very little to "worry" about thus far with Rainer, but I don't mean to heavy- handedly say "But look at all we DO have to deal with with Georgia." It's just happened that way today. That we have all these things to manage/think about with Georgia now.

So that said. The rest of the reason my day has been one of those ones.

First, the dentist. Georgia does not have a lot of room in her mouth, nor does she have all her teeth--she has about 10 and a half (I say 'about' because I don't tend these days to stick my fingers into her bite-y mouth to check, but I DO know she has one coming in near the lower front which makes up the half)--so the pedi wants her to be evaluated again to see if the lack of space is going to cause problems. This will be her third visit to a dentist, but her first in MD and her first since she started having an EXTRAORDINARY fear of doctors. I never DID tell you about how when we went to the cardiologist last month--by the way, they didn't do a sedated echo, or even an echo at all, in part because Georgia was sick and in part because she was hysterical and in part because of her history and the fact that she sounded good, we don't have to go back for TWO years (woot.)--anyway, yeah, she started crying IN THE PARKING GARAGE for THAT doctor visit. She used to be a DREAM at doctor's visits, but I think some repressed memories from all the early medical stuff must come up and cause her fear nowadays. Do you think that's possible? I do.

Anyway. I am just all over the place. I am NOT looking forward to that dentist appointment. And it's this coming Monday. UGH.

Then there's her eyes. We saw the eye doctor just before Christmas. It was miserable (see: doctor appointments above), but overall she got a good bill of health and her prescription (though she doesn't wear glasses at this point) worsened only slightly. Wouldn't you know that about two weeks ago I started noticing that her right eye was crossing. It had NEVER done that before and while we DID think that eye seemed smaller, or like she closed it more when she was JUST JUST born, we never noticed any problems. Today, when the OT was over she mentioned that she saw Georgia's eye cross. (G was facing away from me.) I mentioned how I had seen it happen about 5 to 7 times over the last two weeks and we got to talking and it happened two more times while the OT was here! She mentioned that it might be caused by low tone and that it could cause depth perception problems if it persists which would cause all sorts of problems for walking, fine motor tasks etc...lots of things as you can imagine. So I put a call into the optometrist we just saw pretty much immediately after the OT left. The eye doc was nice, but Georgia was so difficult that I don't really know how great a look she got at her eyes (not for not trying that's for sure). She referred me to an ophthamologist and so now we have THAT appointment of doom to look forward to as well.

I've been told that chances are Georgia might need a patch over her dominant eye to strengthen the weaker eye (I don't see THAT happening without a struggle), or, potentially surgery. But at this point we may not need to do ANYTHING unless she starts crossing more often...which considering how quickly she's gone from NOT crossing EVER to doing it 3 times in 25 minutes...sigh....I don't know.

And did I mention that I have 20/20 vision? Yeah. Well at least I DID. Now, I am not so sure. Before the OT came over and I got more worried about G's eyes I had JUST gotten off the phone with the same eye doctor's office making an appointment for myself. Appears my vision is going. I have been having a difficult time with distances pretty much since Rainer was born. I don't know if it's related (hormonally?? Is that possible???), but I've been complaining about it so much that Alex insisted I make an appointment since we have the insurance and I haven't been to the eye doctor in MANY MANY years. We'll see. (Or won't we?)

So FINALLY. The thing that is just MOST bothering me today (as if teeth with no place to go and crossing eyes weren't enough) has to do with Georgia and preschool. I had a confusing conversation with the OT (who I really like) about how it works in MD and the fact that Georgia will be "tested out" of EI in the fall. (She will transition next December when she turns three.) Anyhow, she basically told me that while several years ago I might have wanted to have G in the 5-day special ed pre-school program because it was THAT good, that I would probably strongly want to consider having her in a community (read: private, read further: ka-ching,and yet more: typical) program 2-3 days a week as well because the kids in the Sp.Ed. program these days are testing out at very low levels. Apparently they are in some cases not even recommending kids to go to these schools if they test out at 24 months. That means, 3-year-olds who test at a 2-year-old level. Hm. Doesn't that sound weird? She DID say that it might not be the case with Georgia since she has a "known condition," but she wanted to give me a head's up.

And it's not like I DON'T want G in a typical classroom. I think I've decided that I want her to split her time so she can be around typical kids, but also get the services she needs (PT, OT, Speech) in the Sp.Ed. program. Oh...I don't know. I am only just beginning to think about all this, but here's the thing: the OT (and other therapists at other times over the last few weeks) and I have been talking about Georgia & preschool lately because she just turned two and only has a year left in the program (6 months before we seriously start talking about transitioning). It was recommended that we get G in a 2-year-old community (typical) program so that we can assess what she is capable of in that kind of a setting and because then we could start her in the fall rather than wait until January when we might not be able to find a 3-year-old program for her. If she was already IN a program at 2 she could stay with it and transfer to the three class at SOME point (whether or not that happened when she was 3 or not, I don't know). And also, it would just help her to be around other kids more often in a structured setting.

OK. All those details are not important right now and I am not even sure I am understanding it all correctly, I just know it's stressing me out.

So. I called this program at a Lutheran church that is literally around the corner from us because I have been noticing their sign (they accept twos) and because our OT said she's heard they have a good structured program (i.e. circle time and one-on-one as opposed to free range playing) which Georgia will most likely need if she is going to make any progress. There is a part of the day where they discuss Jesus and the teachings of Jesus which makes me feel SOMEWHAT of a hypocrite because I don't know what I believe in terms of all that stuff, but not TOO much of a hypocrite because I think the teachings of Jesus in terms of parables are really just lessons in DECENCY and KINDNESS and who WOULDN'T want their kid to learn lessons like that? But anyway...

The woman was really nice, she explained a lot about the program, and before she went too far I asked her if they had ever or would consider taking in a child with DS. They have not but she sort of went on about how they were open to lots of things and ultimately it seemed like they would be amenable.

There were some awkward parts of the conversation when she asked what Georgia's "issues" might be. Not in a mean way, not even in an ignorant way or anything, it just felt awkward because other than the fact that Georgia is not TALKING I couldn't really think of any issues and I said as much, but then the woman said something like "Is there anything because of the DS that might make it hard for her to be in the preschool setting?" And I told her I wasn't sure exactly what she meant and I asked "Are you wondering about her socialization skills?" and the woman asked "Well, is she scared of groups or anything like that?" Which, again, I want to be clear she wasn't being rude or anything, but I kind of thought "well might not ANY kid be a bit afraid of a new group?" And I told her that really, Georgia is pretty good with groups and overall REALLY social and I reiterated that the only BIG difference they might find at this point was her lack of language and I explained that she understands a lot and has her ways of communicating, but she is not talking at this point.

Anyway. The conversation was fine. Just weird. And so she told me they were having a teacher meeting tomorrow evening and that she would bring it up with the other teachers to see if it was something they felt they could handle. Which really. That's fair, right? Or is it? I mean...maybe they should withhold deciding until they MEET Georgia and see if SHE is someone they can handle as opposed to her diagnosis? She asked if it would be ok to give my name and number to the teachers in case they had any questions and of course I agreed. But then all of a sudden I felt like I had to make this huge PITCH for Georgia. For us. I found myself saying stuff like "I am a stay at home mom and I am really proactive and involved and would be more than happy to answer any questions or share some basic sign language so that maybe the teachers could better understand Georgia or help her communicate more." And on and on. And the woman suggested that I ought to come and see the school to see if it was something I thought would work for Georgia, and I agree of course. I won't just send her ANYWHERE. But I kind of felt like, well, why dangle the carrot under our nose if you might not even allow us a nibble? And I told her that if the teachers seemed open to having Georgia that I would like to set up a time to come see the school.

And while really maybe it's not a HUGE deal? There's also part of me who can't believe that they might not even considering meeting her, let alone accepting her. I don't want to jump the gun on it. I am hoping they just say "yes!" and then I will just be relieved and then we'll go and we'll like the place and come fall Georgia will be a school-goer!

And I have taken several more breaks from writing this and Alex has come home and I've explained all this to him and he's convinced me (reminded me) that even if they say something like "We don't think it's something we can handle," that I can say something like "Perhaps you'd be willing to meet us and Georgia before you make any final decisions." But this is that stuff. The hard stuff. The stuff I sort of conveniently "forgot" we might have to face one day. And I'll be honest. It hurts. And it's sad. And it makes me angry to know that my daughter can be legally rejected.

And it's just one of those days.

Comments

[cate]

Holy wow, that's a lot going on.

Can I just say I'm amazed that you WROTE all that? I can't find time to post one lousy picture.

Anyway. There's a lot to comment on but most importantly, I think the school thing is so hard. Unless the teachers are adamantly against it, at least set up a time to go over and have you all meet each other.

And if they do say no? Not very Jesus-like. IMnot-so-religiousO.

The whole school thing scares me. And we're about to get into it too.

[Laura]

The transition process is hard. It seems as soon a you get use to it you are transitioning to the next (preschool then school aged) level. It does suck worring if your child will be excepted. I had that problem when I signed Katie up for dance class. The teacher was very accepting but I had to be there with Katie to help her and the other parents weren't very nice about it. I ended up pulling her out. These are definately things we are going to have to deal with as parents but I am glad they are at the age where they don't realize how cruel people are yet.

[Anne]

When you wrote that you felt like you were making this pitch to sell Georgia, to sell your family... I understand that completely. Welcome to this new signpost in the journey. :-)

[Mindee]

By way of encouragement . . .
1) My friends with 5 kids had to give up ALL dairy while she nursed each of them. All 5 eat dairy just fine today.

2) Do you have a pediatric dentist in your area? My kids go to one and it goes soooo much more smoothly than at a typical dentist office. She also takes adults with DS.

3) It sounds like the pre-school lady is trying. You probably caught her off guard and maybe she's not in a position to give a yay or nay without talking to the teachers. Folks who haven't been around DS kids are wading into unfamiliar terrain. They don't know what to expect. It's good that she's being cautious and making sure everyone is on board and that they can be a good place for Georgia before she commits.

For what it's worth, I love your mama bear instinct that you have with BOTH your kids. You're doing a good job!

[Brandie]

I've been dreading transition time since Goldie was born. I keep going over the different options trying to decide what would be best for her. Just remember, you can always change your mind. That's what I keep telling myself.

Don't sweat the dairy. My middle dd screamed for hours if I ate dairy. She was at least 2 before I gave her milk, but she handles it just fine now. BTW, she is my "typical" child who hates big/unfamiliar groups of people and at 3 yo spit in the dentist's face. Does Georgia have a dr kit? Role playing can help.

[Chrystal]

Ugh. I totally get what you're saying. Like, why should you have to try and "sell" Miss G to them? I do stuff like that instinctively sometimes and then feel bad about it later, like, "I shouldn't have had to do that. Why did I do that?"

All this balancing and thinking and wondering...

What a day, huh?

[starrlife]

I was so sad when we had to move on from EI where we got so much support out into the big wide world! We were fortunate to have a pre-school that had a mix of kids with disabilities and "typical" kids and it was so inviting and comfortable. Just shop around and don't be afraid to be direct about what you want. I explored every program within a driving range, interviewed them. I was so disappointed with our fancy schmancy Montessori program in that there was absolutely a lack of orientation towards any kid with disability but every area has it's own type of Montessori environment.It is usually just a shocking lack of exposure to special needs kids that many teachers/programs have and that does not mean that they will not be that special place that is able to be thrilled at their first experience with you and your child!Your child has alot to offer any program- keep that in mind! It's what you have to offer as well as what they have to offer! Just like in a job interview. Believe ME when I say that many "typical" kids have a wide range of abilities and behaviors, some very unpleasant- your child probably is a dream compared to many! You will find that she is much more well behaved in the classroom than at home 90% of the time (ironic isn't it?). Our program was a mix of structured and open play, which my daughter with DS thrived in. Also, in Vt they offer an Early education case manager that coordinates the ongoing services like Speech/OT/PT or whatever. Do they have that there? This is such a difficult period but I know that you have the "mama bear" skills to get what Georgia and you need! Email me if you want to talk more- I could talk about this forever (joyduke at gmail). But sounds like you are doing a great job!

[Master Dillon's Mom-Melissa]

UGH, I really feel for you girl! You have so much going on.

Transitioning Georgia is going to be a little nerve racking, but ok!! One tip for ya is to write down your thoughts & desires for her. Writing my thoughts down has helped me so much in keeping focused so this way when I do "advocate" for Dillon...I'm not feeling like a "lost little girl"...LOL Good luck, it's going to work out!!

[Julia]

OK, three things. One- Abbie had a severe milk allergy. We had to tote that darned epi pen with us everywhere we went for three years. I was a nervous mess whenever she was out of my sight, scared that someone might feed her something with milk in it. But she OUTGREW it. Heaven. It was a long three years, but now she's totally fine. Maybe he will, too? You just have to be diligent for awhile, look for foods marked "pareve" or vegan.

Two-Abs also has a lazy eye. You might not have to do the patch, you can use atropine drops to dilate the good eye and force them to use the crossing eye. We've been doing it for maybe five years now. Abbie may or may not have surgery in the next couple of years, the atropine drops have almost completely fixed it.

Three- Preschool. They might be right that because Ds is a known diagnosis that you can keep services no matter where she tests. That's the way it is here in Howard County. We're doing the special ed preschool (its 50/50 with typical peers, the twins are peers in the program) and we LOVE it. I really like that she gets all of her services there at school. Less stress at home. Just another option.

OK, that was way too long, sorry. I hope you have a better day!!

[Lisa b]

ug. I am under the impression that here in Canada - or at least in my province, no one can legally refuse her. The daycare at my work were actually excited and told me they can get a community OT to come in through a government program.