Jan 29, 2014

Life

Yeah I know, I'm slow at this. We've been pretty busy since Thanksgiving and are just now starting to get back into a normal routine. I think we'll probably have everything settled down by, oh, July. You know, just in time to prepare Lexi for going back to school. If that is what we choose to do.

I kind of feel like we're in a no win situation with this whole school thing. But right now we're just having fun  and learning together. (Check out my instagram for some of the learning things we do.)

We've had some pretty extreme cold here lately and so getting out to our unheated garage to work on new projects for our shop has been so hard. I've got lots of ideas rolling around in my head but can't try any of them out right now.

Lexi recently got a new scoliosis brace (I'll update more on that soon). It's going slightly better than the last or the casts. But it's still a struggle. I will say that she has been much happier with me, since taking her out of school, and she doesn't fight everything quite so much anymore. Which is nice. I feel terrible enough having to put her through all this and then the guilt of losing my temper because she never stopped fighting or screaming about something. All day. Day after Day. Life in general feels more relaxed now.

Even if I do have crippling anxiety that I'm going to fail her in the learning department.

On a final note, for today: We got a letter from insurance about the genetic testing. It's a NO. Which I expected. We may never know our genetic mutation for sure so I may as well just spill the theory.

It's tentatively believed that we have a new/varied version of Charcot-Marie-Tooth with Autonomic Dysfunction. Which, you know, kind of makes sense given the symptoms. The only thing that doesn't fit is the scratching to the point of scarring. And, well, that we were born with symptoms rather than developed them later. Which is where the new/varied part comes in.

I've done a lot of reading on all the different versions of CMT and the more I read the more my life makes so much more sense. It would be both good and bad news. Good because we don't have as high of a chance of suffering the respiratory/heart issues that people with HSANs have. Bad because if my life to this point has been any indication, I'll probably be relying on a wheelchair soon rather than later.

A purple wheelchair would be kind of awesome though.

Nov 25, 2013

Mommy, puh-lay with ME

My daughter's brace is going to kill me. Just so we are all on the same page.

The first time I forced her to wear it to bed she woke up at midnight screaming her head off. It slowly got better each subsequent night. Then, one night, we were out of clean undershirts. We only have 4, one is already old and worn and itchy (from her first attempt in a brace), and they have to be washed after each period of wear (or each day). With only 3 undershirts, that she would be willing to wear to bed, and a messy day, we could end up with no clean undershirts for bed. So I let her go without the brace one night, while I washed the undershirts.

Big mistake.

The next night was torture. She was basically in and out of sleep all night, ripping my hair out and whimpering the whole time. I had such a headache and was so tired I just wanted to stay in bed forever.

But then it got better, with each night of wearing the brace. She was sleeping pretty well (or pretty well for her anyway).

And then we ran out of undershirts, again.

Ugh.

You would think I would make sure to at least do one load of laundry a day and make sure at least 2 of the rotten things are in there or already clean. You would think, by now, that I would have learned to do that before bedtime.

So again, she went to bed without her brace. That was Saturday night.

Last night I wanted to drowned myself in the bathtub. My head is killing me. I don't feel like doing anything but sitting on the couch and vegging out. I just want to sleep, and sleep, and sleep.

Every few minutes I hear "Mommy, puh-lay with ME".

Nov 21, 2013

New Shop, Mergers, and Whatnot

I'm going to merge this and my home decor blog. That way I can spend time focusing more on our new shop.

I'll still post about all the stuff, and about shop stuff here and have my LAIW facebook and twitter, but the extra set of things for a separate home blog is too much to keep up with.

I'll divide everything into easy to find sections, that way you can get to the stuff you are most interested in.

This should all be completed by December, fingers crossed.

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We're having a small sale at our Etsy Shop, 10% off for our Grand Opening. Use Coupon Code: GrandOpen1 .

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It was kind of crazy timing, to start a new shop while pulling my daughter out of school. But I'm sure it'll all work out.

My daughter has been formally withdrawn from the public school district. We'll have a lot of options next year, but for now we're kind of stuck. Which is the best thing for her at this point. We'll have time to reconnect, work through issues that came about from forcing her into something she really didn't like.

(Not that school is the only issue. I get to be the bad guy on everything, so I foresee a strained relationship always. Which fucking sucks. Pardon my language but I think this whole crappy life calls for bad language.)

I'm still kind of mad about the whole thing. The school has every excuse for everything and don't want to move an inch on anything. While there are things I wholeheartedly agree with them on, such as 2 year old children shouldn't be in school, there are things I just don't understand.

But they are well within their legal rights, so I don't really know what to say.

I probably won't have her go back to that school, next year, but I'll try to get her in somewhere where she'll then stay with the same general group of kids throughout the rest of her school career. Then I'll just pray to god we have a relatively smooth ride from there on out.

I'm not mad at any particular person, although I don't care for that classroom aid much. I think it was just a really crappy situation that could have been avoided had the school of put a tiny bit more thought into something like this happening. Which I'm told they have done, now. It also could have been avoided if I'd of just grown a pair and, just once in my stupid worthless life, stuck up for myself and my kid.

But, on to bigger and better things. Hopefully, with a little luck and a ton of effort, the future will once again look bright. I'm not holding my breath, but, you know, it's good to have a dream.

Nov 14, 2013

This is Frustration:

UPDATED TO ADD:
Inclusion, or least restrictive environment, is based on peer groupings. Meaning children in a similar age range. Usually the range is defined as September 2 to September 1 of each year. Meaning, in any given year, all children born on or within those dates (e.g. September 2, 2012 to September 1, 2013) are peers or are in the same peer group.

Our school district is taking a hard-line, no exceptions stance on 4K enrollment based on age. If the child's birth date falls at any point after September 1 of the current school year, they are NOT eligible to enter 4K. Even if they turn 4 years old on September 2.

The district considers all kids not age eligible to be of Daycare/Head Start/Private Preschool age and in that peer group. They are within their rights to do this, as the law is written in Wisconsin. Therefor, if the child is not age eligible, they are not the responsibility of the public school district.

For the vast majority, this is not a problem. For those who disagree with 4K programs, this is not a problem. For those who think children should not spend so much time in school, this is not a problem. 4K is not mandated. Enrollment and attendance is not compulsory.

So, why then is this a problem? Given Lexi's medical/physical issues, she qualifies for Early Childhood Special Education. As such it is the local public school district's responsibility to teach, care for, and provide any therapy services needed by or on the age of 3 years.

What our school district is doing is playing two laws, "Age of Eligibility for 4 and 5 Kindergarten" and "Least Restrictive Environment", against each other to create a sort of loophole. This loophole only works in a situation like the one with my daughter, where she is too cognitively advanced for special education but has physical and medical needs for special education and related services.

Because of the relatively unique nature of Lexi's medical issues, she falls into a vast gray area of disability, and need. There are no rules. There are no standards with which to weigh options against.

Therefor, we are trapped; unable to pull her out or risk losing services and creating problems when we re-enroll next year but not feeling safe or comfortable sending her to the school alone every day.

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You know what really makes me mad? That my daughter could have had a much better experience with school but now we are trapped here.

Sure, I could be done with the whole thing, but that would require homeschooling her. I could do it to a point, but I'm terrible with math, so terrible that I never once passed a math class in my life. I used to overdraw my checkbook regularly. I'd be terrified for the poor kid. Also, I can't drive so it's not like I could get her out there with other kids, doing things.

She hates school. She always going to hate it now.

You see, my daughter is too smart and too social for special education. Unfortunately, she could only just barely walk when she first became eligible to have an IEP school team made available to her.

Here's the thing; we do not necessarily have a severe disability, but we do have a potentially serious medical condition. Aside from that distinction, the potential for serious injury, especially to extremities, is always present. Always. The school disagrees. The neurologist doesn't want to/won't see her often enough to really get to know her or what her needs might be. The orthopedist, while a great doctor, only deals with the Scoliosis stuff. Scoliosis alone doesn't mean anything to special education services. (That didn't stop us from getting his opinion and to our surprise having him immediately offer to write the school regarding his opinion. Like I said, he is a great doctor.) Our family doctor/her primary care physician sees this as a disability with potentially serious safety concerns. And still the school disagrees.

So we were given a choice: do it the school's way or take her out and they refuse any responsibility for PT/OT services.

Our school district has decided that ECSE (Early Childhood Special Education) and 4K are not peer groups and therefor 4K can not be considered for inclusion. For those who don't know; inclusion is simply the allowance of disabled children to spend as much time with non-disabled children, in school and during school hours, as possible. The law refers to inclusion as placing a child in their "least restrictive environment".

And why has the school decided these two classes, that are literally next door to each other, are not peer groups? Because our area has 1 church run Preschool class, 1 private Preschool class, and 2 Head Start classes, those are the ECSE children's peer group. They have also, more specifically, determined that the 4K group is not my daughter's peer group based on the fact that her birth date falls after the age for eligibility date. By 3 weeks.

Our district also sees issue with mainstreaming while a child has an IEP. They seem to think that can't be done. Even though that also falls under the "least restrictive environment" rules. They also seem to think, despite laws allowing for and/or requiring it, they don't have to provide services should we move her to her "least restrictive environment".

My daughter hates school because it's not giving her the challenge that would keep it interesting and the social that would keep it fun.

The school did not tell us anything. They did not tell us about "least restrictive environment", or the allowance by law to receive services through another Preschool. I told people, lots of people, that I didn't want her in school. I didn't think it appropriate for a 2 year old to be in school 4 days a week for 3 hours. I was brainwashed, by the school and other people who I should not have been asking opinions from, into believing this would be good for her.

It's been anything but.

The big kicker? The school is technically following the law and they technically don't have to do anything else, at this point.

I'm pissed at everyone who pushed me into this. I'm pissed that I got bad advice about choosing the public school over a private preschool. I'm pissed that we do (or rather did) have other options but because no one told us about them, we can no longer get her into any other school. I'm pissed that she is stuck in a situation that makes her so unhappy and there is nothing I can do to fix it. I'm pissed that the school keeps saying everything is my fault and my problem to deal with.

Most of all: I'm livid with myself. I hate myself for going along with this whole messed up situation. I hate that I'm too afraid to stand up and say "hey, stop, it's not good for her".

On top of all of that; there have been many little incidents that have accumulated to create a tension between her and I and has added to her hatred of school. And there was one big incident.

I debated talking about this publicly. I'm not sure it is indicative of a larger problem, I'm willing to make the allowance that it is a unique situation. I'm not sure I would feel confident in saying other children are at risk. But for my child, I have to speak up.

Lexi has some autonomic nervous system issues. Her pupils are slow to contract, her blood pressure might fluctuate more than normal. She might lack thirst or feel excessively thirsty (which I did not know until recently). She easily fatigues. And she can have bouts of Cyanotic Expiratory Apnea (breath holding spells that cause her to turn blue and sometimes pass out).

These spells are usually more scary than they are dangerous. Also, children don't have any control of these episodes, they are not using them to manipulate.

Mind you, we thought she had "grown out of" these scary "spells".

A few weeks ago we were waiting for the bus on our front step. Lexi was upset and as the bus came down our street, she took off running. Instead of running away or back to the house, she ran towards the spot the bus picks her up. Not knowing if she was going to stop in time or if she would fall into the road, I freaked and ran after her. I screamed at her and grabbed her by the shoulders.

As the bus pulled to a stop I explained to Lexi why she shouldn't do that.

As soon as the bus stopped and the doors opened, the aid (who also happens to be the classroom aid in Lexi's class) ran down the steps. She grabbed my daughter by the arm and pulled her away from the bus. Immediately started yelling at her. It was so rough and so quick that it sent Lexi into a panic. Again, we had thought she had outgrown the breath holding spells of which she has no control over. She'd been through a lot and (as far as I knew) hadn't had a single one in months. But the aid have scared her so much that Lexi instantly started turning blue.

She was not breathing, was turning blue, was reaching for me and I for her, and the aid shoved Lexi up the bus steps and onto the bus.

I've been nervous about sending her to school ever since. All the other stuff happened after this.

None of the things going on have been technically against the law. Which means I barely have a voice in anything going on and poor Lexi is in a situation that is, at best, simply not appropriate for her needs.

Could this be any more frustrating?

Nov 11, 2013

I'm still around, just dealing with stuff.

I can't do it. I can not do it. I can not separate my emotions to write about anything. The harder I try the worse it gets. I've actually written several posts about really important disability/our family stuff but they are so emotionally driven that I sound crazy and whiny.

I can't seem to write any other way than desperate, whiny, and crazy.

Maybe because all of the things I try to write about hit very personally for me? Maybe I need to try a few topics that I don't have a personal interest in? But then what would be the point of writing about them? I suppose purely for information. That wouldn't be a bad thing.

At any rate, it's been one of those really frustrating times lately. You know the kind, where it seems like nothing goes right, but it doesn't really go wrong either, it just isn't ideal. A not ideal situation leads to a lot of "well, I could do Y but how will that affect X" or "I don't really care about B, right now, but I might in the future". It's a period of no easy answers or best possible situations.

There is nothing I hate more than living in limbo, but a close second would be having to choose the best of a bunch on not ideal situations.

I'd go into more detail but then I start to get emotional and whiny and crazy. My head is already killing me.

Oct 28, 2013

I'm back. . .

. . . and just in time for some fun / spooky Halloween photos.

halloweenBnW

Oct 9, 2013

We Might Have. . .

We are so close to possibly knowing the genetic cause (and a possible name of a condition to go with it) that I can't help but to feel antsy. It turns out that what we might have has possible symptom treatments.

Some doctors are leery of using some medications, especially if it is potentially off-lable use, unless they are sure that the medication could be helpful. So having a definitive diagnosis, as to where exactly the nerves are having issues, would make it easier. However, in my case they have been known to try things that had the potential of helping even being unsure of my exact diagnosis.

It's exciting and frustrating.

And what's going to hold everything up? Insurance. I won't name names but a certain insurance company is, evidently, throwing quite the hissy fit lately. Not wanting to approve anything for anyone. Can't say I'm surprised. At this point I couldn't care less about me but it's sad that money and politics could prevent Lexi from getting help. But that is the world we live in.

So that's where we're at right now.

Oh yeah, I'm also going in to get tested for diabetes this week. Fun stuff. Go me!

PS. I'm not comfortable naming the condition the doctors believe we have, just yet. The thing is, if we have it we would be rare and unique even among the rare and unique. Which we kind of already knew. But the fact we were born with it kind of makes us, um, different. Which makes me afraid to go ahead and declare this is what we have. Because what if it turns out to be another dead end?