Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Sunday, February 25, 2007

It's Been One Heck of a Weekend (I MIss You Bob!)

I don't even know where to begin! I suppose I'll start with Friday....

Friday was one of those days because, well, it was a Friday! It wasn't overwhelmingly wonderful, and it wasn't overwhelmingly terrible. Fridays generally are busy days for me, and this was no exception. I'm not sure if many of you know, but since October when Sandis was given the diagnosis of PDD-NOS, we've been waiting on school evaluations to finalize the diagnosis. See, Sandis scored extremely high on the Asperger's Diagnostic Scale. If his IQ and Adaptive Evaluations were in line with the Asperger's Diagnosis, his diagnosis may have changed from PDD-NOS to Aspergers. Well, a few evaluations faxed later and we have our news, which essentially, is no news. Sandis's diagnosis will not change. He does not fit clinical criteria for Aspergers due to the low score on his Adaptive evaluation.

I don't know how I feel about this. On Friday I was fairly annoyed. I feel like PDD-NOS is an umbrella diagnosis (it is) with no clear clinical guidelines other than having autistic tendencies but not clearly fitting into any of the other clear diagnoses under Pervasive Developmental Disorder. I felt like if I had a more clear diagnosis, then perhaps I would feel like things were more clear. Does that sound crazy? It is, I know. I recognize this, and I'm moving on.

The clinical psychologist told me that Aspergers was in general "worse" than the spectrum disorder Sandis has. This statement offended me on so many levels. First of all, I have trouble imagining Sandis as "worse" or "better" depending on his final diagnosis. Secondly, it doesn't make any sense. Sandis is a child that fits all Asperger clinical guidelines, except for the fact that he has LESS functional life skills than children with that diagnosis have. Phooey.

Bob and I talked, and we decided that NEXT year (read January of 2008) we will take Sandis back to the U of M, but this time not the attention clinic, this time we will take him to the neuropsychology Autism Center and do a full round of neuropsychological evaluations again at that time. Children change, and so can diagnoses after a year of observations and interventions at the school. I personally feel that we went in with very basic information last year, but next year, we will go in with a plethora of information. We already have new information, that I feel they overlooked at the Attention Clinic. Sandis actually has a communicative speech delay. Expressively and Receptively he tests fabulously, but in social communication he is testing at around age 2 level (four standard deviations below the norm for his age).

Ahhh Diabetes. Gracie is doing very well with her increase of Lantus. I am seeing much fewer highs, nothing over 200. She's had a 190 and a 157 post prandial tonight, but those I can certainly live with. She is also waking up under 100 90% of the time, which is fabulous. It makes me sad to pull back that plunger to the one, knowing that only a few months ago I pulled it back only to the 1/2, and it worked for her. For a short time. Better this than keto-acidosis though. Better this slow acceptance for all of us.

Gracie asked me the other day if when she grew up she wouldn't have to take shots anymore. Talk about a glimpse into a three year old's point of view, eh? Her response to me as I told her that no, she would have to take them forever, was pretty disheartening. Tears, pouty lip, and a few more tears. "But I don't want to take shots forever mom!" She found peace with all of this after a few minutes then walked around "When I die I won't have to take shots anymore!" Ahhhhhhhhh.....If only I could find peace in that!

On to Snow. We got SNOW. Not like a little bit of snow but like I'm gonna snow your brains out snow. Want to know the most ironic part of all this snow? This is my last weekend as caretaker, and I am responsible for shoveling that snow. After basically no snow all winter, the LAST weekend before I stop this job, I get the mother load of all storms and snow. Pfffft. I could have done without that.

It is also extremely heavy snow. So I shoveled twice yesterday, and felt a column of pain up my back this morning. I look out the window, well over a foot drifted right over my sidewalk and stairs. haha, I cussed inwardly and did what anyone would do. I ignored it, for basically all day. And then I only shoveled the entry ways and left the sidewalks. It still took over an hour, so don't think I was slacking too hard. Soon after I shovelled they plowed the parking lot, and plowed snow right into my entry way and stairwell. So I shovelled again. Figures eh?

My wonderful Bob (who I have loved and hated alternatingly this weekend) was not able to make it up in part due to the snow. I can't remember the last time I was alone with the kids all weekend. I would love to say I enjoyed it, and there were times with them that I thorougly enjoyed. I'm not feeling all that hot though, my throat hurts and I've been running low grade fevers, so I certainly had my moments where I felt like I just couldn't do it. Bob is such a help on the weekends, with him I retain my sanity. Suffice it to say that I am happy the weekend is over, so I can relax at work!

I think this about covers my weekend, and basically leaves out any cussing I may have been doing so I can preserve my image of sweet mum :) Have a nice week ya'll, and if you are in minnesota, I hope you can get out of your driveway and enjoy the snow!

5 comments:

Chrissie in Belgium said...

Thinking of you Sarah! I am glad Bob will be back. lIFE IS always easier when you have someone to share it with.

Megan said...

That conversation with Gracie makes me so sad. Does she realize you have diabetes too? Maybe that would make her feel better...if mommy can do it...she can.

Scott K. Johnson said...

I think you all have a good plan for Sandis - as you said, things can change!

On the snow thing - the timing is incredible. One more weekend later and you would not have to deal with it.

I actually had to dig my truck out - my 4x4 truck that got stuck. That is not supposed to happen.

Ah well, it will all melt in a couple months right?

Jonah said...

Does she know about other insulin absorption methods?
Was the question really about taking insulin or shots?
There are lots of ways to get insulin.

Camera Obscura said...

I've always thought of Asperger's as the most-functional end of the spectrum, and PDD-NOS as "we don't have a name this particular brand" that covers everything but the bleedingly-obvious. If you're having trouble getting what you need on an IEP, you're much better off w/ PDD-NOS than Asperger's. They'll say, "Oh, it's just Asperger's, he doesn't need any help except for socializing."