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, December 31, 2006

Up All Night?


The children are napping. This is an anticipatory measure for the long night ahead. IF I let them stay up.

I haven't told them that there is a possibility that the two of them can stay up later than ever before. I'm not yet certain if I can live with that decision.

There is so much to take into consideration.

I don't have cable, so we can't watch the ball drop. In fact, I have no TV channels at all, so we would have to find entertaining things to do for HOURS. That shouldn't be a huge problem but seeing as how staying up this late is so far from our norm, I'm not sure that I can pull it off without major meltdowns from one or both participating parties. The question would more than likely be who would freak out FIRST. At which point one or both would be forced into early retirement, and really, that is never all that much fun. That forced bedtime as opposed to the jolly staying-up-late thing that may have been promised.

So I have resolved to not promise anything, nor mention anything, about perhaps staying up late. We will just play it by ear. That way, if one or two meltdowns occur necessitating immediate bed time enforcement, it won't be the loss of a really cool privilege. It will simply be time for bed. Time for bed a little outside of normal routine, but time for bed nonetheless. No promises.

Friday, December 29, 2006

The Morning RX


This is what it takes to make it through the morning in my house.

I can yell. I can scream. I can bargain. I can bribe. And it does not a whit of good.

For six years I have been doing not a whit of good struggling with what I can get with what I've got to offer. Recently, that what I've got and what I've got to offer arsenal got a little bit bigger.

It's funny, really. No one EVER recommends to paste up a visual schedule when your child is assumed to be neurotypical but still not getting the morning routine done. Instead you get advice on how to be more consistent, how to let some things go, how to set up a reward system (Ya right, reward system, how do you set up a reward system when your child just forgets the rewards moments later? Unless of course it has anything to do with Harry Potter or for the first time in weeks you offer something you JUST DON'T HAVE out of desperation.) And it just doesn't work. It doesn't work one bit.

But I'll be damned if this stinkin' little visual schedule I've been concocting every morning (or night before) isn't getting it done. Instead of 20 - 30 verbal reminders (those hopeless verbal reminders that fall on ears involved with something else and only cause my irritation to mount!), I have 5-7 verbal reminders, and amen sisters, we are out the door on time.

All I have to say about this is this: Why didn't anyone tell me about this sooner?

First Month Off and the Eleven Point Difference

I’ve mentioned this before and I think, seeing as how I have my first cycle off under my belt, it is time to revisit it!

I stopped taking “the pill” a little over a month ago. I did this to see if I could achieve tighter blood sugar control without the pill. Well, the results are in (at least 28 days worth) and I am busting to share the news…..

While still taking the pill my average blood sugars over the course of 30 days were 157. This first month off of the pill my average blood sugars were 146.1. That is an eleven mg/dl difference which means a jump from an a1c of 6.6 to 6.3 .

The major thing I’ve noticed in this month is I am having a lot fewer blood sugars in the 200’s. In fact, there were several days last month where my blood sugars didn’t top 200 at all, and only twice did I rise up into the three hundreds. I also had only TWO blood sugars (at least recorded) less than 60. Big deal this increase in stability. That means that I am getting my 146 average not from lofty highs and seedy lows combined, but from consistently more normal sugars. Awesome.

I am curious to see if this trend continues or if it all gets screwed up by some bodily something or other that aches to see me closer to 160 than 150. Ah well, only time will tell! And perhaps a few of those diabetic women on “the pill” will cue back in when I have my 60 day results!

Thursday, December 28, 2006

Medication Skepticism

Sandis had his psychiatric assessment today. The whole psychological evaluation/psychiatric evaluation thing to me is a tad confusing. I'll explain so you can be confused and somewhat frustrated with me. The psychologist does all of the evaluations. She will distribute standardized surveys and questionnaires to teachers, caregivers, day care staff, and parents to try and gather information based on a the standardized psychological axes. She (the psychologist) will spend quite a bit of time in interaction with the child and has an EXTENSIVE interview with the parent discussing concerns and behaviors, and again, doing a standardized survey and questionnaire. After the many hours you and your child spend with this psychologist, they assess the surveys and standardized questionnaires and intersperse that information with their own observations garnered from time spent with the child and what was discussed in the parent interview. The psychologist then makes an educated guess as to what they believe the diagnosis to be. They are not qualified to actually make a diagnosis, but they ARE qualified to recommend a diagnosis based on all of the information they have gathered and quantified.

The psychiatrist, then, takes the written evaluation summary from the psychologist, spends five minutes one on one with your child, and has limited conversation with the parent. After this short and usually long-awaited visit, they pull a diagnosis from their hat which from here on out will be this child's official medical diagnosis (ie. diagnosis from a medical doctor, EXTREMELY IMPORTATNT!)

Does this seem backwards to you? I mean, I don't mean to discredit all of the psychiatrists out there, but it seems to me that they read a bunch of information about my son gathered from other people, and basically they can say yay or nay to diagnoses recommended by the psychologists (you know, the folks who spent any real time with my son) based on their limited exposure to my son.

Pfft.

Anyhow, medical diagnoses are absolutely necessary to qualify for disability medicaid programs, SSI, and most other services that are obtainable from government sources. So this psychiatrist visit is absolutely necessary to ensure that all services Sandis needs are able to be provided.

Today's visit wasn't bad at all. The psychiatrist handed over the PDD-NOS primary and ADHD-NOS secondary without batting an eyelash. He did mention that Sandis's ADHD is atypical as it is not constant and is prevalant in certain situations that are predictable. Well, I could have told him that anyway.

Then came the drug pushing......

I am skeptical about medicating my child. When I was 23 I was assaulted and my neck was injured. I endured constant pain for a couple of years, and I was "medicated" for my pain with narcotic pain meds. I was also treated for Generalized Anxiety Disorder. One medication led to another. I followed the doctor's orders. I took the medication as prescribed, but the pain persisted as did the anxiety. Over the course of a few years one med tacked on top of another med tacked on top of another. The true sources of my problems were never treated, only the symptoms. I ended up in drug treatment for fentanyl addiction two years after this medication journey began. It was a horrible experience. Coming out from the depths was excruciatingly painful. What I put my family through during the worst of my addiction is more than shameful. I do not intend to lessen my part in my addiction with this, but I truly wish that my doctors had first attempted to help me with a solution other than the solution that is found on a prescription pad. Not a quick-fix, but a solution to help me manage my pain (other than addictive meds) and a plan to help me manage my anxiety. Granted I didn't ask for this, but only coming out of the depths of an intense drug addiction did I ask for something different. I remember all of this, and because of my experience, medicating my son is not going to be my first option. It also won't be my second, third, fourth, or fifth. It will be my last and it will more than likely be a choice made in desperation. Well, maybe not that bad....but it gets my point across how low on my list of treatment options medication is.

So the psychiatrist feels that perhaps Risperdal would be a good option for Sandis. The most common side affects are: gain of 15% of body weight, in-alertness (isn't that what it is supposed to be helping?), lack of energy.....He said that risperdal is one of the only medications studied in treating children on the autism spectrum. (That is fine, but why does it fit my son?) He said that it has been shown to help improve transitioning, improve adaptability, reduce aggression, and reduce disruptive behavior. Granted, my son needs help in ALL of these areas. The psychiatrist also told me that even though I am loving and tolerant of Sandis's ineptness in social situations, for the most part other people will not be tolerant and this will cause Sandis many painful problems in the future. I understand that too. Although that is a painful thing to think about, I think it is my responsibility to address the pros and cons of this treatment.

I told the psychiatrist that as of yet Sandis has had no IEP interventions at school (we are working on that) and will start Occupational and Speech therapy in January. I told him that I feel the most comfortable waiting until Sandis has had an opportunity to be in OT and ST and have his IEP up and rolling and see if things improve. I stated that I would be willing to re-evaluate my stance on medication in the future, once Sandis has had an opportunity to have other interventions.

The psychiatrist seemed okay with that, but I did go home with about 15 pages of information on...................Risperdal

Ya well, I had to humor him eh?

Tuesday, December 26, 2006

Our Christmas....In Pictures

Ah yes, Our Christmas....

We spent our Christmas at my dad's house, some five hours north of St. Cloud. It was a nice visit, and it was tiring......As visiting relatives so often is! My family is so interesting, so I will share a bit. My dad is 54 and after my mom and he divorced when I was seventeen he remarried. Not right away but a few years later after he found a beautiful young and small woman he deemed wonderful enough to love the rest of his life. And then, they had two kids. AACCCKKK!

So long story short, I am 28 and I have a 7 year old little sister, and a five year old little brother. They are awesome, and when I bring my six year old son and three year old daughter, they are all peas in a pod. They don't quite understand the aunt-uncle-niece-nephew fun that is the four of them, but they certainly enjoy the family that they are!

We opened Christmas outfits on Christmas Eve, just in time for Christmas Eve service. Here is Gracie in hers.....And I really like the shadow look in this picture, so you can't really see the outfit...


After getting dressed up, of course...The boys had to get in a little wrasslin'



We took the option of opening all the presents on Christmas Eve at night. At my house, we would do things a little differently. We open one present on Christmas Eve and then all the rest on Christmas. At my dad's they open them all on the Eve and have a present from Santa in the morning. This was an interesting deal seeing as how neither of my kids believe on Santa (thanks to me....) Here's a picture of Gracie enjoying the company of Grandpa while we waited to open presents (such a sweet pair!)



This is a great image of the mania that ensued....



This is a great image of how all of us felt AFTER IT WAS ALL DONE....



On Christmas morning we all woke up to stuffed stockings (that is except for me, as Bob neglected to factor in that he was the one in fact that should fill MY stocking...) We had an awesome Christmas dinner thanks to nanny Karen, then packed our bags to head the five hour jaunt home. So we could do it ALL OVER AGAIN. I insisted on putting everything away once we got home, and the kids were CHAOS. It was hilarious, really....Honest....



Bob bought some awesome gifts for the kids, and so did his mom. Bob's mom even bought me some CLOTHES. I WOULD be a clothes horse if I ever had any money to buy myself clothes, so it was so nice to have some presents to open up. Bob had already opened up his presents from his mum, so he just had the cymbal I bought him. Which he opened last. And he loved....



Later that night, we set up shop to sleep the night, Bob and I in my bed, and the kids each zipped up securely in their tents. It was awesome.



I must say that this year has been fabulous and really stinkin hard all in the same breath. But you know what? Those fabulous parts make all that stinky crap just so worth it.

Merry Stinkin' Christmas!

Thursday, December 21, 2006

Diabetes Made Visible (In My Life)

If you haven't checked out the Flickr group Diabetes Made Visible yet, I suggest you head on over and do so!

I've put up a few pictures at the group, and I am also going to put up the pictures I post here today in that group. The main reason I post pictures in that group is because I believe I have something to offer. I am a type 1 diabetic, but my pictures will not focus on myself, but on my peanut. I believe I have something to offer because my peanut is only three. It is hard to imagine poking a three year old. It is hard to see a three year old's blood as being part of a daily routine. It is touching for people who are not directly affected by diabetes, and even for people who are directly affected by diabetes, to see how it affects one of diabete's littlest members.

I want my pictures of my peanut and diabetes to reach out and pull on heartstrings. I want Gracie's story to make other people want to stop type 1 diabetes. I want my beautiful little girl with diabetes to make people scream "NO FAIR! THIS IS NOT RIGHT!"

Because it isn't right. This shouldn't be her life. There should be something better. This isn't good enough. And once again, I want people who see my daughter to know and to feel that it could just as well be THEIR daughter. Type 1 diabetes as an autoimmune disease does not discriminate.

That being said, here are a few pictures from today's routine.

To start out with, Gracie wasn't real happy with the finger I chose. I count to five while I wait for her to pick a finger. Sometimes she is hesitant, so I count to five again. Today I counted to five FIVE times, and still no finger was chosen, so I had to choose myself. I hate those times, she fights me so much! I picked her thumb, and then she got super mad at me because I didn't let her put the blood in the strip all by herself. That isn't something I let her do yet anyhow, but she struggles so much to get back her control with diabetes (she has no idea that this will be a CONSTANT from now on!)

I was greeted with a not so friendly 190. Hmmph. I hate numbers like these, and they are creeping up ever so slowly. We had three perfect days after one rough day and then hello, we have another rough day. I'm not ready to start short-acting insulin yet, okay God?!!

Lastly, I handed Gracie the reigns and she gave mister Rufus (the bear with diabetes) his nightly shot. Well, not nightly, sometimes one of her babies gets the shot instead. It just depends on who is on Gracie patrol that night!

Tuesday, December 19, 2006

The Perfect Love Story


So there they are......Miss Gracie has snuck down into Sandis's bed. Once again. It can really tick me off when she does this just to play after I tuck them in for bed. But, this is different. They do this every night. She sneaks down into his bed and they sleep. They've learned I don't handle the sneaking down to play bit very well.....

Sandis started sneaking into Gracie's bed to sleep when she was a newborn. I used to worry about him rolling on her, but he has always been so hyperconscious of her safety and well-being. She has always been so hyperconscious of Sandis and his whereabouts. A hungry Gracie as an infant would just as easily follow Sandis with her eyes as she would a bottle. She adores him. He adores her. It is the perfect love story.

Perfect.

Monday, December 18, 2006

Tagged and the IEP Adventure

So I was tagged by Crazy George for this Christmas tag thing. Thank you George for tagging me! I felt all warm and fuzzy because I was tagged before I even really knew there was a tag going on!

So the deal is that I get to pick five favorite Christmas songs. I'm not sure if any of you know that I am a pastor's daughter (yep I'm a PK, thus my scattered past!), so all of my songs will be songs from church that I grew up LOVING.

1. Oh Little Town of Bethlehem
2. Away in a Manger - I've sang this song to my kids since they were babies. I love this song. My son knows it by heart, and my peanut, she doesn't have the joy to sing quite as much as Sandis and I, but she still enjoys to hear it!
3. Joy to the World - This was the liveliest song at Christmastime, us folks were darn near jumping out of the pews!
4. The First Noel
5. (I probably have this name wrong) Gloria! In Excelsius Deo!

So that's that on christmas songs! I can't say I have been super caught up on blogs lately, so If you have already been tagged, please please please disregard me

I am tagging
Julia , Chris, Penny , Vivian , and lastly Beth

I don't expect me to wow me with your songs, but I do expect an occasional wow with words!

On other news and events, I have Sandis's first IEP meeting tomorrow morning at 7:15. I meet with so many people, all at once, and I'm sure it will scare me to death. I have been working towards this for quite some time though, and it feels awesome to know I am moving towards my goal. My goal? My immediate goal of providing Sandis with the services he needs in school to make strides socially and with life skills.

One thing I really fear with Sandis is I fear that his life skills will not evolve and grow. I hope that they will, but typically with Aspergers kids, their intellect is right on the money but their ability to handle life and move through life and tackle obstacles with common sense and tact is severely impaired. This means that many Aspergers adults are in assisted living or group home situations. There are also those Aspergers adults that grow up and learn the very basic life skills to function independently. I hope that Sandis can have this. I mainly hope for this because I know that as a single mom with very limited resources that I just don't have what it would take to set up a decent trust for him if he grows up and still needs additional assistance. As long as I am alive I will provide, but what happens when I'm not around?

Bob doesn't think I should worry about this. I think I need to think about this now. What can I do NOW? I know I said I was tabling this, but it is hard to wrench my heart from this.

We will be starting Occupational Therapy and Speech Therapy this month. These are both geared to address social and life skills. Sandis is an awesome learner, I hope so much that he can slow down mentally and physically enough to learn these skills.

He will be exactly as God intended regardles, but it is hard to find that fine line. Are my expectations too low? Are my expectations too high? What is reasonable to expect?

I have no idea.

Saturday, December 16, 2006

One Christmas Concert Later........

So, yesterday was Sandis's Christmas Concert at the school. It was awesome because Bob managed to get down in Saint Cloud on Thursday night, so he stayed home with Gracie on Friday and we ALL got to troop on down to elementary school concert central and cheer my boy on!

If you remember, I was a little worried about the riser situation. Sandis had repeatedly been in trouble at school in the past weeks for pushing other children off the risers, so I had my fingers crossed. There was a TON of parents, so many people! They were out to see their kindergarten angel, although, mine was by far the best looking and most talented! I was nervous about how Sandis would do with that crowd. Sandis really struggles in situations where there are a lot of people, a lot of movement, and fluorescent lights (read Walmart). I was hoping for the best.

Things went FABULOUSLY! Sandis looked a little stressed at first. I really think he should have been sent out with a fidget toy or his chew necklace (hindsight is always so informative!) because as they filed out and waited for their first song, I swear to god he was about ready to chew his shirt button right off!



They gave all us proud parents a chance to wave to our kids and take pictures before the event began. It was great! At first Sandis couldn't find us. Bob and I resorted to hollering his name to get him to take notice of where we were. It was the funniest thing when he finally found us with his eyes, his entire face lit up and his tongue wagged right out, a huge smile framing it. It was the funniest face ever. I wish I had gotten a picture! Bob and I both cracked up, but after the initial happy face, we did get a wave!



Sandis really got into the singing part, especially at the beginning. Sandis not only sings and loves music, but he feels music. You can literally see it moving from toes to eyebrows (especially his eyebrows). Bob even mentioned at the end of the concert that Sandis was the most entertaining child on the risers because he just seems to ENJOY the music so much. (So maybe we are a bit biassed). I also just figured out how to use the close up on my camera at this point, too bad the pics are still fuzzy....



The entire concert lasted thirty minutes, perhaps around 35. Towards the end, Sandis decided that maybe he wasn't all that into the music anymore. Plus, I think he was tired from trying and singing so hard. So, my boy checked out. It was fabulously cute and slightly sad in a few different ways. I'm glad he picked an appropriate way to "check out" for a few songs, because it could have really gone the other way! He was obviously getting bored....Although, he did pick it up and sing the last song!



All in all, I think I left as the proudest mommy in history! Mrs. Brown (Sandis's teacher) came up to me afterwards just to share in my joy of how well he did! We both were a little concerned with how this whole concert thing was gonna pan out. I know how hard Sandis worked to pull this off, and I know he had to work harder to stay with and in it than most of the kids on those risers. And he did an awesome job!

Friday, December 15, 2006

The Christmas Feast

Today at work we are having an all day affair named The Christmas Feast.

Wow.

So I've gained 6-8 lbs and now I get to eat all day..

Anyone else's jeans fitting a little tighter lately? Or a lot tighter?

I'm gonna start running and counting calories again come January. I could start now, but I'd be setting myself up for failure with Christmas coming up.

but I feel like such a fattie.

Thursday, December 14, 2006

Trust Funds and Christmas Concerts

The kids and I just went to a Parents of Autism Info Group. Today the focus was on Supplemental Needs Trust Funds and Special Needs Trust Funds. The whole point of these trusts is to ensure that once you die, your special needs or disabled child will have access to money you want to leave to him without that money disqualifying him/her for things like Medical Assistance and SSI.

One of the interesting points that was brought up is that if you are on SSI as a disabled adult, the most in assets you may own (excluding your house) is $2000. This number has not been raised in over 20 years. The amount of assets you may have to stay on Medical Assistance is $3000. This amount has also not been raised in a huge amount of time. The question us parents asked is WHY? The answer was obvious, special needs adults don't vote (very rarely in any case), so their voice is not heard.

I have no idea how independent Sandis is going to be as an adult. My hope is he will function just as well as I do and have (perhaps better as I half-assed functioned until I was 25 and then I was forced to function). But, I really don't know what the future holds for him. I have no way of knowing if his autistic traits will disable him as an adult. I know they certainly pose problems as a child, but he is so smart! I hope that his intelligence will make up for the many social and sensory delays he has. I hope. But I don't KNOW.

I'm thinking of starting up a supplemental needs trust for Sandis. As the Grantor and trustee of this trust, if Sandis ends up completely independent and he does not need this trust, I can simply pull the funds and GIVE them to him, or just pull the funds and close the trust. I'm torn. All this estate planning, will planning, etc.....It is a lot to take in and consider. What will happen when the kids are gone? Who should I designate as a power of attorney if I can not handle my financial responsibilities and tasks myself due to illness or injury? Who should I ask to commit to be their full time guardian (and advocate for their unique needs) in the event of my death? AAACCCKKK!

I'm not gonna die man! I'm gonna live forever!!!! Nothing bad is ever going to happen! H
ow do I prepare for all this cripe on my salary? If Sandis isn't independent as an adult, how do I make sure he is cared for when I am gone?

Honestly, I don't think I'm ready for this question. I really don't. So, decision made, estate planning and trust fund planning gets set on the back burner for 90 days, at which point I will revisit and reevaluate what I perceive our needs to be.

I feel so much better!

Sandis has his Christmas Concert at school tomorrow. they couldn't have picked a more convenient time. Friday morning at 11:30. Hmmph. Thank god my work is understanding! As an added treat, Bob is attending! He often isn't in town until friday night, and I know Sandis is so excited! Sandis has been running around the house belting out "this land is your land, this land is my land, from california to the....." for WEEKS now. I'm not necessarily expecting that to stop (I think singing soothes him) but it will be nice to see him perform with the other kids.

I'm crossing my fingers he doesn't push one of the kids off the risers, which has been a problem recently at recitals. Ah well, I can't say he isn't fiesty!

Tuesday, December 12, 2006

Christmas is Closing In! (and Other Updates....)

I realized that Christmas is closing in on us today, at some point between 4:20 and 4:30 on Sandis's and my drive from SPOT rehab to pickup my peanut Gracie. Christmas is almost here! Holy Shit!

It really isn't all that stressful. Should it maybe be more stressful? I won't wish that on anyone. I guess that everything feels like a stress vacation when compared to the end of October and beginning of November. Christmas feels like a stress vacation! Yikes! (What the hell is going on here?)

I've done most of my shopping, and Bob and I have worked the ins and outs of Christmas shopping for my dazzling duo (Sandis and Gracie, better known as pumpkin and peanut). Bob bought them one of those piano video game sets, and got them each their own game. I bought Sandis an outfit, a pair of shoes, a hot wheels car case, a drawing book, and a pretend city (for all those hot wheels cars to inhabit!) I bought Gracie a baby (complete with diapers and bottles), an outfit, a jewelry box, two bracelets, a pair of earrings and a watch. What is left is Dance Dance Revolution (for both kids to share), stocking stuffers, and a CD for each of the kiddos. Bob is getting a cymbal. Don't freak out because I wrote it up here. He knows what he is getting, so no surprise there! I can't believe that with not managing to make 40 hours ONCE in the past six weeks, that I've budgeted this all in. AMAZING!

We are driving 5 hours north to Warren, MN to be at my dad's house for Christmas. It should be fun and mildly uncomfortable. Anyone else ever have holidays like that? I've got to buy my dad and my little brother a present, but Bob is volunteering to (more like I volunteered him to) buy my dad's wife a present. I told him what to get, so the only thing out of his pocket, is well, the money out of his pocket!

Sandis has completed his PT, ST, and OT evaluations that I had done privately. The school is running short on their prescribed thirty school days to complete evaluations for the IEP, so it looks like my ambitious therapist's evaluations will be the evaluations the school uses to help determine needs. I'm not sure that many of you will be able to grasp just how cool that is! To sum it up, the therapists who did the evaluations were not biassed to the school's needs, but biassed to my son's needs. A-W-E-S-O-M-E.

Sandis had no recommendations for PT. He is a strong little bugger and was running at speeds more common for a 7-1/2 year old than a 6 year old. I can say without a doubt that he didn't get that from me! I also can say that I was far from surprised about his speed, as he has been running from me since he could walk! For ST she told me she would recommend 1 therapy per week focussing on social skills and then on his S (apparently my boy has a lisp.....). Occupational therapy is going to recommend twice a week with home programs as well. I knew that Sandis needed the most help with sensory integration, and I was not surprised that his evaluations showed this as well. I am EXCITED to start learning more about how to help my son, and my FAMILY function better in day to day tasks!

Gracie has been doing awesome! Although, she really is quite a pistol. It must be those curls, because damn, she has a rage that can move mountains! She had her highest blood sugar EVER a couple nights ago of 199. It was enough to make me weepy for a night, but I recovered and she woke up with a blood sugar under 100 so I was back to pretending everything is peachy and normal. It is all I can do until they aren't!

I have been spending a lot of time reading. Recently I had my cable shut off (and my cable internet a couple weeks before that) essentially because Charter sucks major assage. The only thing Charter can get right is an upgrade. If you downgrade ANYTHING expect multiple unapologetic F*** ups and right along with it inflated and incorrect billing. The whole things still makes me seethe. I will be seeing a 116 buck refund. Go Charter! Yay! Anyhow, without the t.v. I suddenly and miraculously have oodles of time to READ! I love to read, and have fooled myself into believing I have no time. But I do have time. This proves it. I was choosing to spend my time otherwise. I need to join a book club that gives me classic fiction I've never read for FREE and then lets me keep the books. I don't care if they are soft cover.

We have been busy, all in all. Have you? Ours is a good busy. Ours is a productive busy. Ours is the busy that God gives us when he enriches our lives with things we love and are passionate about.

Here is to busi - ness!

Monday, December 11, 2006

This Post is About Me

I've rambled for far too long about my children. Now is the time to truly delve into the Sarah depths of well, Sarah-ness stuff.

I stopped taking the pill. I've stopped taking the pill because I've noticed that with any hormone therapy I've ever used that is designed to prevent pregnancy, those hormones make me resistant to insulin. I also have another side effect I'd like to attribute to the pill, which has to do with desire and my lack of it. I won't delve too deeply into that subject though! (I know I have male readers and I totally am not going to try to chase you off to never peer at my blog again!)

I am wondering if any of you ladies out there on insulin therapy have noticed trends in insulin resistance/sensitivity in relation to their cycle? On top of that, I'm wondering if any of you have ever noticed resistance/sensitivity in relation to hormones you take, namely estrogen and progesterone?

I used the patch for some time. My gynecologist advised me to stop using the patch, not only because of the increased risk of clot, but the increased risk of clot combined with 15 years of type 1 diabetes. I was happy to comply. On the patch you have three weeks with the patch and one week without. I literally would used 1-1/2 to 2 times as much insulin on the weeks I wore the patch. Post patch I switched easily to ortho-tricycline. This has worked okay, but I still have elevated sugars and I am more insulin resistant when I take the hormones.

So far I have been off the pill for 16 days. So far so good. Last month this time my average blood sugars were 157 (actually October, November my average was 180 and doesn't count because of stress overload). So far this month my weekly averages have been 143 and 147. What does 10 mg/dl mean in an a1c? Well, from 157 to 147, it brings the a1c from 6.6 to 6.3. Is it worth it to switch to my latex pals?

I'll get back with you on that one.

Friday, December 08, 2006

Melancholy..Different Expectations

This weeks and next week’s schedule:
M Dec. 4th - Work 8 - 4:30
T Dec. 5th - Work 8 - 4, Sandis PT evaluation at 5pm
W Dec. 6th - Work 8 - 1:00, Sandis Dr. appt at 2:45pm, Sandis ST evaluation at 3:30pm
R Dec. 7th - Work 8 - 5
F Dec. 8th - Gracie 8am PT evaluation, work 10 - 4:30, clean building tonight
S Dec. 9th - Work 8:30 - 1:30
S Dec. 10th - Clean house (perhaps, more like drink vodka and be a bum (just teasing about the vodka!)

M Dec. 11th - Work 8 - 5
T Dec. 12th - Work 8 - 1:15, Sandis ST eval. At 2:15pm, Sandis OT eval. at 3:15pm
W Dec. 13th - Work 7:30 - 12:30, Sandis GF/CF consult 1:30pm
R Dec. 14th - Work 8 - 5, Autism parent support group at 6:30 - 8pm
F Dec. 15th - Work 8 - 9am, Sandis classroom observ & music show
9:30 - 12:30pm, Work 1 - 4:30pm, clean building tonight
S Dec. 16th - Work (for some undetermined amount of time, as of yet)
S Dec. 17th - drink more vodka (not really but I’ll consider it) and bum around the house considering doing some ironing

Anyone catching a trend? I am SUPPOSED to work 40 hours a week, but I’m averaging around 33, although with the addition of working a few Saturdays, I’m hoping to up that by a few hours. I am blessed that I work for a company that is large enough for me to qualify for FMLA protection, or I would be HISTORY with my job and my availability.

I’ve been running from one appointment to the next. It feels so good to get all of this stuff under my belt and it feels awesome to know I am putting one foot in front of the other, but it is just so MUCH! I have so much to organize. I have so much to keep track of. I am so tired!

Gracie had her physical therapy evaluation today. I haven’t talked so much about this aspect of Gracie, the leg and joint aspect. Gracie has extremely flexible joints, so much so that she can fold her thumb back to her forearm, hyperextend her knees, and sit Indian style with her feet FLAT on the floor (quite a sight!). This has caused some locomotive delays, intoe-ing, and toe-walking. I’ve known for quite
some time that we were going to have to deal with these problems, but I haven’t been dealing with it. I was waiting for this appointment to come up, and I figured I would deal with it then. It makes me sad to have just one more thing. It just makes me sad. I don’t know how to explain it any other way.

We decided on physical therapy at least once a week ( the most I can afford right now! ), some orthotics (plastic braces) which should help position her feet in the correct direction and keep her off of her toes, knee braces to help with hyperextension of her knees, special tape to help hold her feet and lower legs in the correct direction, and a hip brace (hugger) that when used during therapy and at home should help position her legs forward and get her using the appropriate muscles to move around. It is more than I expected. The problems the therapist pointed out I already knew. Her PT evaluation showed that she had the locomotion capabilities of a two and a half year old. I told the PT before evaluation that she looks two, so I think that because of that her mobility problems are noticed less because she moves okay for a two year old, but not okay for a 3 and a half year old. It was surprising (kind of) that I was right on with that statement.

I’m sad because we have one more thing to add to our plate. I’m sad because, when I had my babies, I imagined them as strong and healthy and perfect. They ARE strong and healthy and perfect, but I wish I didn’t even KNOW what Aspergers was. I wish that my vocabulary didn’t include EDS, and I wish that I never had to see the indoors
of a pediatric rehabilitation center. I didn’t sign up for this! Give me back my healthy and normally developing children!

Ah well. Fat load of good that did. In previous posts I’ve talked about a reality shift. I’ve really fallen into my new reality, but I’m still in my grief process. My grief over what I expected, what I thought this was going to be like, and how wrong I was. My grief over health expectations that are far from being realized. My grief over things being different than what I want, and different from what I
expected. I guess I’ll get over that. I don’t really have a choice. And I guess that it is okay to grieve. I just have to shut my door first, so the kids don’t see me...

Wednesday, December 06, 2006

I CAN

As a special needs mum to two newly-diagnosed special-needs kids, I've noticed lately that I get stuck in their diagnoses. It is hard not to. At each doctor's appointment or therapy evaluation I am asked: "What are your concerns....?"

I'm not concerned that my son is the speediest runner in his class. I'm concerned that my son can not interract in appropriate ways with his peers. I'm concerned that my son and I do not communicate effectively.

I'm not concerned that Gracie has the sweetest demeanor since Polyanna. I'm concerned that her blood sugars range from normal to uh, much higher than normal. I'm concerned that she can't run without planting her face promptly on the floor.

I'm not concerned with my kids's CANS lately. I'm concerned with their CAN'TS. And well, that is concerning!

My son is the sweetest young man I know. His smile will light the inner depths of your heart. My son is the most caring older brother I know. He hovers over his Gracie ensuring her safety. If my daughter were to attempt to cross a busy street on her own, my panicked voice would quickly be accompanied by Sandis's panicked staccato screaming for her to STOP! My son is a FAST runner. He did not get that from me, though, because I am slow, he got that from God! My Sandis, he is awesome, he is stunning, he is exuberant, he is exactly how God intended him to be!

My daughter never stops talking. She has a gift for words that far exceeds her brother's (and my my is he wordy!) My daughter is very small in stature ( so itty bitty for her age at around the 7th percentile) but she is HUGE in personality and attitude. My daughter can bring the calmest person to the verge of a nervous breakdown. She is just that crafty! My daughter is very polite. My Gracie, she is sweet, she is cantankerous, and she is EXACTLY how God intended her to be.

Tonight, I'm going to focus on the cans of myself and my children. I've spent way too much time lately focussing on their can'ts. It is time for some positive reinforcement!

Tuesday, December 05, 2006

Special Education Referral Today

Today is an awesome day. Sandis will be referred to a special education caseworker at school today. The past couple of months have led us to this place, and it is the official beginning of the evaluation process for Sandis’s IEP.

I still can be very confused about this entire IEP. There are resources littering the web (see the PACER or Wrightslaw websites). I can read until I turn blue in the face, but I am no lawyer. I’m also not a medical or educational professional. Sandis’s teacher told me to start thinking about some of the things I want in his IEP. If I were a medical or educational professional, perhaps I would be LOADED with great ideas to make his school experience the most conducive to enjoyment and learning as possible, all the while meeting his unique needs. It just isn’t that easy though.

I do have a few concerns which hopefully the IEP can address (this is ending up being a brainstorm):
1. Bullying – How do we address all the bullying issues when you have a child that does not effectively communicate instances of bullying? How do we empower a child that does not understand that he does not “deserve” bullying and he deserves love and respect just like any other child?
2. Social – social cues, adapting to environment, interactive rather than parallel play
3. Speech – delayed echolalia, literal understanding. Sandis has the words, but oftentimes cannot contextually use them or understand what it is he is hearing.
4. Ability to sit with other children at line time – Sandis currently sits in a rocking chair behind the other classmates. I want to find a way to bring him back down on the floor among the other children. I want to cut out the physical separation. Dyno Desk?
5. Sensory Processing – all day, every day. Ie. Chewing, spinning, inability to tolerate noise and smells, difficulty with open spaces (like gymnasiums). Occupational Therapy, para-educator?
6. Self-Confidence and Self-Image – see bullying.
7. Transitions – Prepare for transitions, verbal and visual cues are needed to help ease stress of transitions and reduce tantrums. Try a visual schedule?


I guess that list ended up being a list of concerns as well as possible solutions. It felt good to get that in writing. Maybe I am better at this than I thought? Better at it than I feel?

When faced with challenges, please do not sit back and be complacent. Each challenge is an opportunity to learn. Perhaps once I am through this initial IEP process, I can help other new parents understand the importance of being an educated and involved advocate for their child. It turns out I know and understand more than I thought, and that is really cool! It makes sense, I’ve been thinking about his IEP process in my dreams at night, ever the problem-solver!

Loving our children does not take a manual. It is not something we need to be taught how to do. We love our children in such a way that it can be felt from fingers to toes to deep in our gut.

If only everything were as easy as the love we have for our children. Raising children is hard work, but loving them, damn, that takes no effort at all.

Okay, excuse the jumping around, but I had a few moments of loving introspection that I needed to embrace. If anyone has any good ideas for IEP’s that would help address some of the issues I listed above, I’d love to hear them!

Monday, December 04, 2006

ARISE

There have been a few things bubbling up in my virtual blogosphere of a brain lately, sparking ideas for posts, but today I had an experience which really supercedes the importance of all the others. I mean, really, I CAN wait to discuss the role of doubt in the grieving process. I can also wait to bemoan how badly strip bars tick me off (don't even get me started!) Today, I had the awesome experience of witnessing what it means when community makes inclusion for our children REALLY happen. Inclusion that includes not just the kids that are developmentally on par, but also the kids that have a little catching up to do. Today, I saw inclusion actually "include" my son.

ARISE.

ARISE is a local program whose purpose (as I understand it) is to offer free services to local children with disabilities to help them participate in recreational activities with their peers. They offer this help outside of school hours. They offer this help to families who desperately want and need to have their children in extra-curricular programs but cannot afford the program AND the aide. They offer their help to children who desire to be with other children their age. They give these children, my son, a chance to experience things they would otherwise be excluded from because of their disability.

I have been acting as my son's aide during gymnastics thus far. I enrolled my peanut in dance so my son could be in his class, because without an aide, he is simply too disruptive to the class. Acting as an aide to your own child in a situation that should serve to teach him social skills as well as build self confidence is exhausting. It also, in many ways, defeats the purpose. My son has a comfort level with me that he does not have with others. My son does not feel the need to practise his social skills when I am with him. He has me. He does not need to actively attempt to engage anyone else but me.

I met Rhonda 15 minutes before class time today, and she met Sandis. I had an opportunity earlier in the day to discuss with her some of the ins and outs with Sandis. She was AWESOME! She took to my son, and he took to her, and she helped him with a wonderfully caring attitude. Sandis didn't have to have his "mommy" watching over him during class. Sandis gained indepence, and he also gained a friend in Rhonda. It helped in countless ways that Rhonda knows so much already about disorders on the autism spectrum, and intuitively had a few ideas to help Sandis process all the sensory input that is thrown at him during class.

I, for the first time since gymnastics started, enjoyed this hour. I watched my peanut dance (holey moley she has no coordination! so cute!) I watched Sandis do his cartwheels with an intensity he just didn't have with me at his side. I watched his class function and I watched Sandis function, appropriately (with a little help, and sometimes more than a little help!) with other little boys his age. I gained a new respect for these people that give their time, free of charge, to help children with such a critical part of their life. Their fun time. Their me time. Their explore time. Sandis's move his body time.

And while Rhonda was helping Sandis, she was helping me. She helped Sandis get dressed and in his jacket after class. She helped walk Sandis to the car. She loaned me some sanity and spared me my yelling voice.

Man oh man, these ARISE helpers are damn near angels.

I don't know if there are ARISE programs elsewhere in the state of Minnesota or even in the US. I know that ARISE helps give a little bit more to the kids that really really need it. I know that ARISE gave Sandis gymnastics and a friend. I know that ARISE gave me back my Monday nights, to be a parent, not an aide. ARISE gave me an opportunity to watch and enjoy.

I so look forward to next week gymnastics and dance! I can't wait to see Gracie's antics on the dance floor! I can't wait to see Sandis making a new friend! I can't wait to see cartwheels and somersaults and beginning roundoffs. I can't WAIT!

Thank You, ARISE, for giving me all of this. And even more, Thank you God, for recognizing the need my Sandis has, and giving him (and me!) EXACTLY what he needs.

Thursday, November 30, 2006

Why I Hate Rufus....(At Least a Little)

Rufus arrived in the mail today. A few of you, Im sure, know who Rufus is. Rufus is the bear with diabetes. I called the Minnesota chapter of the JDRF a couple of weeks ago and requested a bag of hope, and $7.75 in postage (paid for by JDRF) and a couple of weeks later, here comes Rufus the bear with diabetes and a load of other stuff.

Gracie is THRILLED about her bear with diabetes. We read the book and she was so excited because it was about things she has to do, too. She loves this bear already. And I think I might hate it. I mean, I love what this bear has given my daughter, but every day in my daughter's damned honeymoon scares me more and this Rufus just nails in the bitter truth of her diabetes reality. Ick. I've been off and on tears all day. I thought I was over this, but endocrinologist (not for me but for her) and stupid diabetic bear is way too much reality for this reality stricken mama in a week.

We are not really dealing with a full three year old diabetes reality yet. Gracie doesn't take insulin with meals yet. She doesn't need a medical id bracelet, yet. She takes a tiny amount of lantus at bedtime, 1/2 unit. We have one glucagon kit, but she really isn't in danger of having a low. We don't count carbohydrates for her and we don't really watch what she eats. See what I mean about not being in full three year old diabetes reality? So it is easy to fool myself that it will stay like this forever. I joked at the doctor's office that a honeymoon of ten years sounds just "perfect." I can handle a shot at night and 4 - 6 pokes a day. I don't want to do more. I don't want to watch her sugars rise. Thus far each day they are mostly normal, and subsequently I am mostly okay.

Ick. I cannot adequately express the fear this ick is, or the pain this ick is, or the sinking feeling this ick is. It just is. And this bear is proof that this isn't going away and this isn't going to get better. This bear is a punch in the gut. This bear is forcing me to face eventual truths. And I just don't want to. And I'm not sure I can. And I don't want to feel what I will have to feel to get where I need to be to accept this. I'm not ready.

Every reading that isn't right: 164 after dinner last night (groan), 139 this morning (moan), 153 at 2pm on Saturday...Her random readings that show that at least randomly, she isn't staying normal, this isn't going away. This bear is here to stay.

he is kind of cute. I won't chase him off. But damnit, I think I'm gonna pout for at least another night....and thank GOD that bear doesn't expect to sleep in MY ROOM.

Wednesday, November 29, 2006

Lost But Not Stolen

I am the biggest dummy ever.
Seriously.

I received a phone call this morning at 6:30am (WHAT!!???) from the school office (which apparently opens around 6 am). It turns out I left behind my brifcase in the school cafeteria. It makes sense, really. I had brought my briefcase in with me when I picked up Sandis because I needed to give KidStop a copy of his final diagnosis & recommendation paperwork from the U of M. Thing is, I DISTINCTLY remember bringing the briefcase back out with me. I also remember locking my car doors because of said briefcase when we all went into Walgreens after picking up my son. I remember glancing at my briefcase right before going into Panera bread, deciding inwardly whether or not to lock the doors as we went in. I looked at the briefcase, pondered certain irritation when the kids ran all over the parking lot as I unlocked the doors after dinner, and decided to not lock the doors. After dinner we get in the car, and guess what? No briefcase.....

My memory is LYING to me! What the hell? I remember so clearly looking at this briefcase before going into Walgreens and before going into Panera bread. It just wasn't there. Hmmph. I can never trust what I see again. Stupid stinking briefcase.

I am happy to have it back. But.....Yesterday after Gracie's endocrine appointment as I walked back to the parking ramp OVERFLOWING with medical "stuff" for Gracie, important documents folded and stashed here and there so I could find them later, I decided that no briefcase just wouldn't do.

So I bought a whole new setup. It is quite nice really. There is the blue pad holder that has a six spaced expandable file. Then there is the red pad that although it has no expandable file (blasted target the blue one was the last one) it does have plenty of space. Interestingly enough, Gracie and her type 1 diabetes takes up less space than Sandis's autism spectrum disorder. To pull it all together there is a monthly calendar and a nice nice (but not leather) over the shoulder bag to hold all that crap in. Check it out......



It is just big enough and just tidy enough to replace my holey moley green backpack that I bought for 3 bucks at walmart two years ago....I think I have climbed a few notches where my professional appearance is concerned anyhow...



But, now I also have my super nice, sheek black leather briefcase. I figure this briefcase is just gonna take a vacation. My new setup is far superior, although not quite as velvety..I really needed this though. Even with the old briefcase, organization of all the documents for FMLA, med records, appointments, treatment plans, contacts, business cards...ick....ack....was just stacked one on top of the other in no real order. Now I can organize and have everything pertaining to that one child at my fingertips.

Oh, and I bought it all at target for 54 bucks...Not bad eh?

....Not bad for a dummy....

Tuesday, November 28, 2006

Finding Peace with Diabetes (a Three Year Old’s Perspective)

What does having diabetes mean to a three year old? How does a three year old deal with a new diabetes diagnosis?

As a 28 year old diagnosed at age thirteen, I can tell you what diabetes meant to me at that age and how I dealt with it. Diabetes meant that I would have to have a series of pokes (daily). Diabetes meant that I would be on the same turf as my mom, and I would start taking insulin shots. Diabetes meant that nothing would ever be the same. I dealt with the diagnosis by learning more about it. I read books. I asked my mom a LOT of questions. I pouted some. I asked my doctor questions, and I pouted and cried some more. I then threw myself into my treatment, working hard to eat according to my exchange diet (haha! Remember those?), take my insulin as prescribed, and record record record.

Looking back, diabetes meant that I was going to have to be poked a lot. I dealt with this by grieving, and learning more about the disease through research and asking questions. I dealt with my new diagnosis also by taking control of what I could, and managing my disease as best as I could.

How would a three year old do this?

You can ask Gracie this today, and she will tell you: “Diabeedees means I get to get poked in my fingers and my bottom.” So, well, that’s pretty much the same eh?

What about the coping skills of a three year old? How does she grieve? How does she learn about it? How does she take control of her situation and her diabetes?

That’s a tall task for any three year old! I think about this and even I feel overwhelmed. It must be so confusing for my little Gracie! All of the sudden, after some loud tears from mum, she has to get poked, A LOT! So how does she grieve? I think she cries, and I think she pouts. I think that is okay. How does she learn about it? She learns about it from me, from what I tell her. That is a huge responsibility. I am her sole resource for learning (other than the 1 per 90 day visit at the endo.) Considering how important learning was for me at my diagnosis, being the sole learning resource for a newly diagnosed peanut is a tall task.

Lastly, how does she gain control over a situation that has very few things she can control? She can’t give herself shots. She can’t even draw up the shot. She CAN go get me the insulin bottle. She can pick where she wants to lie on the floor when we give the shot. She CAN put the strip in the meter, and she CAN look at the number and talk with me about it. She has control over these things. But she needs more. How do most three year olds learn? Through PLAY. My daughter needs to be able to act out what is going on in her life. My daughter will get the control she needs through play.

Isn’t that a novel idea? It isn’t all that novel at all, actually. I thought it was, but they have these Child Life Services employees at Children’s Hospital for which control through PLAY is damn near gospel. Today they gave my daughter a Medical Play Bag. Complete with dolly, play syringe (no needle), medical tape, cotton balls, band-aids, alcohol swabs…..You name it, it is in there.

You can not even believe how awesome it is to give the control back to my peanut. It is so scary to be in her world, and she just doesn’t have the tools to really understand. But we can all help her learn, and we can help her find her peace. The peace she can and will only find in play.

Monday, November 27, 2006

The Missing Black Briefcase (Missing as in Stolen!)

My black briefcase was stolen today. It was a very nice briefcase. My uncle had given it to me. It was a black leather (oohh so soft) zippered briefcase. It was beautiful.

I didn't carry any money, checks, identification, or other items of monetary value in my briefcase. It was a beautiful briefcase that housed nothing else but a history of my children's medical records. My briefcase was a plethora of doctor's visit notes, FMLA paperwork (and then more backup paperwork), long-awaited final diagnosis write-ups, and treatment plans. My briefcase contained day-by-day, event specific notes concerning the grand IEP pursuit.

My briefcase was important.

I looked around for my briefcase peeking into dumpsters (from my car, it was dark and there is freezing rain) hoping to see it abandoned by the fools who wagered it perhaps held some cash, but no such luck. I hope the thieves who stole it, upon realizing that there was nothing good for them in my briefcase, feel as foolish as I do now, as I kick myself for not locking my car that ONE time.

You know, aside from my day-by-day event specific notation concerning my son's IEP, everything in that briefcase can be replaced. But damn, that information was important to me, and I had it organized just so. It pisses me off that someone I don't even know has access to my pumpkin's very personal autism diagnosis and history. It pisses me off that I need to go back to HR to request a copy of the FMLA forms I provided for them. I like having my own records, and I like having them with me pretty much at all times (until it is time to grandfather them to the filing cabinet.)

Ah well, better my briefcase than my purse, eh?

Saturday, November 25, 2006

A Few Good Things (from the Past 30 Days)

Just in case you were thinking that my life is like network t.v. dramas, I figured I would fill all of you in on some of the good (and completely undramatic things) that have happened in the past 30 days......

1. My son got strep throat, and I didn't!
2. I rearranged my living room (yes I admit to being a rearranger cleaner) and it quite possibly looks the most awesome it ever has!
3. Bob drove the distance to my family farm in his car (rather than me in mine!)
4. After Bob drove the distance, my grandma and unclenauntie gave us 30 bucks to help with gas. Guess how much it cost to fill up as we head out of town? 29.99 baby. How cool is that?
5. My daughter overcame her fear of living breathing animals (up until now anything, including kittens, evoked a curdling scream) over thanksgiving at the farm, and even ran up to and fed the horses.

6. I got a picture of Bob loving on a kitten.

7. Bob went hunting with the men of the family. His first time ever hunting, and he came back smiling! Us women were a little worried......
8. I spent some serious gabbing time with grandma, auntie suzie, auntie carla, and Cousin Ronnie (who by the way, is 22, and the last time I saw her I think she was 11..!)
9. I had ice cream.....and cookies.....For dinner today......Words cannot explain how perfect that dinner was.
10. I started my christmas shopping.....and although I could not find that deluxe chess set (table) I was pining to buy for Bob-The-Babe (Builder) I did find some really really really cute stuff for the kids. And so it begins!

Happy Holidays Folks and I hope we can all find reasons to be happy in the little things, because although the big things may be defining moments, they do not define our lives quite so much as the many small things we often take for granted!

Tuesday, November 21, 2006

Classroom Observation

One thing that I have decided to fit into my schedule every month, for at least two hours at a time, is classroom observation. Helping my son at school and helping the school help my son is a huge deal to me. I hope that by observing my son in his classroom, I will get a better feel of what he is encountering during the day. I hope seeing the situation and environment he is in first hand will help me to understand what the school and teacher recommend and enact as aides to him. I hope that experiencing his classroom will help me to come up with my own ideas that fit within his day to help make day to day activities run that much more smoothly for him. I want to make a difference in my son’s education, and I really hope this will be a key part of me understanding and effectively assisting him with it.

I volunteered today in Sandis’s classroom for their “Friendship Feast.” Holey smokes man, if you have never spent a couple of hours first thing in the morning (before breakfast) hanging out and helping to direct 20 some kindergartners, I don’t recommend it! That being said, it was really fabulous. The kids were sweet. I was there from the start of the day, and I actually got to sit down with Sandis as he ate breakfast. He pointed out a boy in the lunchroom during breakfast who apparently picks on him. Sandis got to show me around HIS town, and I think he enjoyed it.

This was my opportunity to see Sandis interact in the classroom. This was my first time in the classroom not only to volunteer, but to see Sandis in action. I have to say, there were moments where I wanted to walk out, take to a corner, and cry. It was painfully obvious in a few instances just how different Sandis is from the other kids, and how ostracized he can be in these instances by the class. There were other times, though, where he blended in and was just another kid. I let those times calm my heart.

I never wanted Sandis to be different. I think that my desire to have him be just like everyone else really blinded me to what was really going on with Sandis’s development. No one ever wants their child to be the one with the developmental delay or problems. It isn’t something we wish for with child still in utero, marveling over baby kicks in mommy’s ribs. Accepting this difference in Sandis is very hard. I know it will bring him pain in his future. I know that there is more burden on me to protect him from that. Sometimes that burden is very heavy.

The thing is though, I didn’t wish for this, but I’m not sure I’d change it. My son is fabulously quirky. He smiles often. My son could not conceive of bullying another child, he does not have a mean bone in him (just don’t ask his sister about this!) My son has focus that exceeds most others abilities when it comes to things that interest him. My son started running when he started walking, and he has never stopped. He will never stop! My son is a blessing of insights and joys that I would not have if he were not exactly as he is. My son is not a mistake, he is a gift from God exactly as he is supposed to be.

I will be in Sandis’s classroom next month, and I imagine it might be hard again. I hope it will get easier. I kow though, that he needs me there, and I need to be there to see him. Seeing my son’s differences makes it easier to go through all that red tape the education system puts down in front of his IEP. Seeing my son’s differences makes me appreciate them that much more.

On a final note, the other night I asked Sandis: “Did you pick mommy? Or did mommy pick you?”
Sandis without hesitation says: “ You picked me mommy! Silly!”

And you know what? He’s so right. I did pick him. I would pick him again. And again. And again. He is mine and I am his and we belong together.

Sunday, November 19, 2006

Some Changes in My Blog Town (or More Accurately, a Few Changes on My Blog Only)

I've changed my Blog description and my profile description on blogger. I really just felt that in light of the past few months, with running pretty much falling off the radar at least for now, that they weren't accurately describing myself and my blog.

I thought about changing the title of my blog, but I love the word nefarious (Deviant Poop).

On Friday, the word was in from the U of M concerning Sandis's final diagnosis. For now, PDD-NOS was the word. The psychologist did explain to me that Sandis scored very high on the Aspergers Syndrome Diagnostic Scale, but that without a cognitive evaluation to show that he has an average to above-average IQ, she cannot make that diagnosis. We will have a cognitive evaluation done by the school and pending the results, she may change the diagnosis to Aspergers in the next few months. Regardless, PDD-NOS is sufficient diagnosis to ensure autism related services in the schools for Sandis. And that Rocks.

I have found the community of parents and caregivers of autistic youth to be wonderful. There is also an abundance of programs for developmentally disabled children through the county and city, and even local charities. The unique challenges of children that fall under the umbrella of PDD disorders are really being met, at least in my case! I wish I could say the same for type 1 diabetic children and their families. Maybe that is something I need to look into trying to organize. Perhaps I just haven't had the exposure to the right programs yet because Gracie's care is in the cities and there is only ONE pediatric endocrinologist in Saint Cloud (who is impossible to get into in any timely manner and does not have the diabetes support team behind him/her so it is kind of silly to seek treatment through him/her anyhow).

Bob bought me two books, Ten Things all Children with Autism Want You to Know, and Aspergers, the Universe, and Everything (which is written by a ten year old boy with Aspergers).

I am going to the family farm for Thanksgiving, leaving on Wednesday night. It is our first time back to the farm since both of the kids's diagnosis. I am doing things a bit differently with Sandis since diagnosis, and I am worried about flack I might get. I am just nervous in general. My family is very supportive, I don't know why I worry.

I have spent most of the day cleaning and doing laundry. God, I love Sundays.

Saturday, November 18, 2006

Circulating the Three MeMe

Meme of Threes

Three Things I Do Every Day:
Test my Blood sugar, Test my daughter's blood sugar, Kiss my Kids

Three Things I Wish I Could Do Every Day:
Wake up refreshed, Run, Eat a plate of cookies with no weight gain consequences

Three Hopes I Have for Today:
I hope I get my laundry done, I hope that I can go to Barnes and Nobles, and I hope I get plenty of kisses and love from my kiddos

Three Things I Hear:
Spirit (the movie), my fan, keys clicking

Three Ways I Have Changed my Life:
Stopped using fentanyl and benzodiazepines, Ran two half-marathons, learned to shut up (sometimes)

Three People I Wish I Could See Again:
Sonja Jaramillo, Grandpa, jello Biafra (although doubtful)

Three Items I Wish I Owned:
A home, an engagement ring, a new couch

Three Wishes I Had When I Was Young:
To make a positive difference in the political world (ick!), to be an engineer, to be known as the smartest woman alive

Three Fears I Have:
The death of one of my children, The death of one of my parents, My car breaking down

Three Things on My Desk:
ky jelly (haha, and I'm not even joking), my cell phone, and my camera

Three Thoughts in My Mind:
I'm tired, Do you remember that cartoon "THE CRITIC"? He has a part in "Spirit"., I wish I had a maid (and I don't even care if he is hot!)

Friday, November 17, 2006

Blessings Come From Unexpected Places (At Unexpected Times!)

Yesterday, as I was feeling sad about my son, something pretty awesome happened.

For the past few weeks it has been especially apparent to the people at work that I have been under some stress. It has been apparent in my attendance. I haven’t made forty hours in a few weeks, and I didn’t even make THIRTY last week! It has been apparent in my dress, as I am less motivated and I have less energy to invest in looking put together and professional. It has been apparent in my work as my abilities to focus on the task at hand has varied, depending on which crisis I am currently dealing with. They have watched me hold back tears at my desk between jobs, and they have watched me rush out and then rush back in between doctor’s appointments. They have answered my phone at my desk so I wouldn’t miss a call while I was in the bathroom, and they have overheard my COUNTLESS phone calls to doctors, social workers, and school officials. They have watched me try to hold it together for at least the past month. I thought I was doing a pretty good job, but I think they figured out I could use a hand.

At lunch yesterday, as I came back from rescheduling a psychiatry appointment for my son (I have to use my cell for long distance), they surprised me with a card. Completely Unexpected! I didn’t even want to open it, I just burst into tears. I have been trying to hold it together for a long time, and things are finally easing up, but I didn’t expect anyone to try and help me. It was a nice card indicating that they were thinking about me, signed by each of my coworkers. Inside was a key to a workout room for an apartment building across the street from me (thanks P!) and there was a gas card. A ONE HUNDRED DOLLAR gas card.

They couldn’t have chosen something better to help me with. They couldn’t have done something nicer. Sometimes, when things are hard, people will surprise you. I’m feeling pretty good about home life, and family life. We are still having our struggles, and really, those will never completely go away. It was nice to know that people around me, the people I see and work with everyday, recognize that I am really struggling to hold it together. It felt really good. It reminded me that God is in my life, and he is working his miracles to give me all the tools I need to keep going.

Sometimes, Blessings just come from the most unexpected places, at the most unexpected times.

If you are a coworker of mine, and you are reading this, A THOUSAND THANK YOUS!

Thursday, November 16, 2006

Bullying

I just don’t get it. Really I don’t. I imagine what goes through a bully’s mind, and well, I can’t even imagine it. Perhaps, even, the things I imagine going through their mind are just too terrible to conceive of a child thinking. Or perhaps, with my 28 years of maturity (or lack of), I just can’t imagine dealing with emotions at a nine or ten year old’s level. I just don’t get how, no matter who you are or how stressed you are, beating up on a little boy who is younger than you is going to calm the storms in your mind, be they small brewing storms or large destructive storms. I just don’t get it.

Right now I am having problems with bullying. More pointedly, my son is being bullied.

He is being bullied at the bus stop. (Before School)

He is being bullied in the bathrooms and on the playground. (During School)

He is being bullied at Kid Stop. (After School)

On Monday morning, my son didn’t want to go to school. Well no freakin wonder, I wouldn’t want to go to school either if I was being physically and emotionally abused before, during, and after school. It sucks. No way man, I’m sick, I think I will stay home. This SUCKS.

Yesterday, my son came home with a black eye. Granted, it isn’t the biggest or nastiest or most swollen black eye in history, but it is definitely there. There was no note and no phone call to accompany this black eye. Nothing.

It turns out that an older kid at Kid Stop pushed Sandis into the mirror in the bathroom. Sandis doesn’t know who he is, but he rarely knows other children’s names anyhow, even if he considers them his friend. He didn’t tell anyone about it, either. I didn’t notice until later that evening, when I got close enough and done enough with chores to really focus on him. Imagine my surprise when I realize his left eye is all swollen, lined red, and has some bruising underneath. It just sucks, not just for him, but for me too. It sucks for me because I can’t imagine, or I CAN imagine what being hit/pushed/kicked at school on any type of regular basis feels like.

I bet it makes him feel worthless. I bet it makes him feel unimportant. I bet it makes him wonder what is wrong with him. There is a whole range of feelings I bet he feels, and it makes me sad that he has even had an opportunity to feel this way.

I know how awesome my son is, and I know that these kids who are doing this don’t have the ability, for whatever reason, to get to know him well enough to know how awesome he is. I know that there is nothing wrong with my son, and that no matter what anyone says or does, no one ever deserves to get hit, kicked, or pushed. I know that, and I hope Sandis listens when I tell him how important and wonderful he is.

I get to spend yet another day calling social workers, school affiliates, etc…..And I shouldn’t have to do this. Because, you know what? This sort of thing just shouldn’t even be an issue, EVER. It’s a shame it has to be.

Wednesday, November 15, 2006

Today is Good

I don’t have a whole heck of a lot going on today, other than work and laundry. Maybe I can get by without doing the laundry? Probably not….

It is nice to know that I will not be running around the world and back today, but it might feel like it a little, because I still have to make dinner. I’m pretty tired, I wish we could just have like cookies or something for dinner. Work today I have been able to focus on “working” rather than on my next phone call either scheduling a therapy evaluation or talking to a social worker. I finally feel like I am not going to come unglued. I finally don’t have the sneaking suspicion that someone is trying to unglue me. Life is evening out.

Sigh.

This is okay, now if only I could wake up! I have abandoned my no diet soda idea I had and practiced for so long, and I really need to get back on the tea wagon. My hydration is suffering! I woke up a little early today and while the kids ate breakfast, I drank a cup of coffee that I brewed myself (with the aid of a coffee maker.) It was nice to sit and talk with my children this morning. I need to wake up early every morning. That would help my rushed, crabby, yelling normal morning routine.

You know that reality shift I was talking about a few days ago? I think I am settling into it now. My daughter told me after her shot last night, “That didn’t even hurt Mom!” Woohooo for small victories eh? I asked her what having diabetes means, and she said “It means I have to be poked.” Ya well, we’ll work on that one, but for now, that really is what diabetes means to her. Her blood sugars have been doing really well, which is calming for my soul. For a few days they were running 130-150 and my heart was doing baby jumps and dives every time I checked her blood sugar, hoping that they weren’t moving on up. They’ve evened out these past few days though and aren’t going over 130, which is relieving, because the full reality of a type 1 three year old is not something I feel ready to jump into. I probably never will be ready though!

I found a local Autism Parent Support Group at the Saint Cloud YMCA that has FREE! Babysitting so I am going to go to that, tomorrow. I can’t get there fast enough. The caregiver community for autistic children has been wonderful and has not skipped a beat in embracing one of their newest members. There are all sorts of programs for caregivers of developmentally disabled children, so I feel like a path has been made for me. It is a little bit different for parents of type 1 kids. There are programs that help parents find respite care for their autistic child, but respite care for their type 1 diabetic child is not available. I can imagine that finding a babysitter (qualified babysitter) to watch a type 1 diabetic three year old is just as hard to find (if not harder) than a six year old with PDD. I’m waiting for some info from JDRF and I’m contacting my local diabetes office and “hoping” to meet some other parents of type 1 children. Maybe we can all help eachother if our needs fit and we can reciprocate help?

Overall, things are just doing much better and I am feeling much more suited to the task at hand. I think that God paired my beautiful son and my beautiful daughter with me specifically for a reason. It is easy for me to understand, perhaps, why my daughter would do so well with me, but I have more trouble understanding why I was chosen to be the sole provider for a little boy with Sandis’s specific needs. Why was I chosen to be the best person for him, and why was he chosen as the best person for me? I guess I need to trust in God that I have what it takes, and if I don’t, I will take the time to ask God for his help. I am truly blessed with my children, and I have learned SO MUCH in the past few weeks. I couldn’t have asked for more.

Tuesday, November 14, 2006

Why Won’t They Call Me Back?!?!

Okay, I’m having a problem. And seriously, it is pissing me off. Lately, just about everything pisses me off though, so I had to really examine this issue to see if it was worth, well, being pissed off about. See the thing is, I can’t get people to call me back. I don’t care if they get ahold of me so much (well I do but that isn’t the point) as knowing that they have made at least one attempt, within 24 hours of me leaving THEM a message, that they have tried to call me back.

Through the course of one day, I usually attempt to contact at least one social worker, at least one nurse, and at least one doctor. I usually attempt SEVERAL times and I often leave SEVERAL messages, depending on how pressed I am feeling to communicate information to them and have information communicated back to me. I receive, on average, one call back per day. And it usually isn’t the one person I REALLY wanted to get ahold of.

Anyone at my son’s school is a prime example of this. Frustrated by my son’s current circumstances with the school I tried to get in touch with the school social worker several times yesterday. I left one message at 8:30 am and then left another, with the school secretary at 3:30pm. I gave her hours and hours and hours to leave a message at one of my THREE numbers (work, home, cell) and I got NOTHING.

NOTHING.

Ick. I can’t tell you how icked that makes me. I do understand that I haven’t given her a full 24 hours, but I was feeling hard pressed yesterday to speak with her, and she didn’t call me back. Ick.

Now going to my son’s teacher. She is fabulous every time I do manage to corner her, but I have taken to interrupting her lunch break in the teacher’s lounge because the woman just does not call me back. And if she is calling me, she isn’t leaving me a message, which would be a crying shame because her not calling me for several days despite me leaving her a daily message really ticks me off.

Ticks. Me. Off.

So, outside of me being a total nag and losing my hair over this crap, how can I get these people to call me back? I’m not even gonna get INTO getting a doctor to call me back, that is a whole new entry right there!

Monday, November 13, 2006

Tender Confidence

Tender confidence is a newly acquired self-confidence. It is a confidence whose length of stay and strength is largely determined by the flux of events, and whether they support this new confidence or whether the events and occurrences of daily life sabotage the roots of this confidence.

Every confidence my son has is a tender confidence. His is a new confidence that is entirely reliant on others, entirely reliant on how his day is structured and molded to fit his needs. His confidence is sensitive to his reality and whether that reality is overwhelming, underwhelming, or dually calming and intriguing.

My son experiences the world differently than anyone I know, which makes his confidences very hard to build up. A plane flying overhead to me is perhaps a buzz in my ear and a sight far away. A plane flying overhead to my son is a wingspan that fills his mind, an intense vibrating noise that fills his ears, and a call to attention that supercedes EVERYTHING ELSE. A large spacious room with plenty of light is perhaps uplifting to me. A large, spacious, and bright room to my son evaporates any layer of security and comfort that had previously blanketed him. This room makes his fingertips tingle, his mind race, and his body sway and spin to accommodate all of this space. My son experiences the world so differently, and he deserves every right to succeed in this world, even if he feels, sees, hears, and understands everything a little bit differently and more intensely than the basic breed of human.

Sandis understands that he is different, he knows and he TRIES to not be different. But he just can’t stop, and why should he? If someone made you try and STOP being the very things that make you YOU, would you struggle with this? Would you even want to try? Sandis’s confidences are built on the tenuous relationship he has with how to experience the world in a socially appropriate manner.

I watched my son begin school overflowing with this tender confidence of his. I watched his eyes brim with excitement of what was to come. And in just over two short months, I have watched his hopes be dashed. I have watched his school deny him an IEP process until I receive an official medical diagnosis. I have watched, in this month and a half since beginning his evaluations at the U of M, as my son has lost each and every friend he had managed to garner. I have watched him come home in tears because what few accommodations that HAVE been made for him outside of an IEP were ignored because they were not communicated to a substitute teacher. I have watched his behavior become so unmanageable at his gymnastic class that I was greeted with an ultimatum, get him an aide or he can’t come back.

In short, I have watched his school fail him. I have watched and I have failed, as well, because I could and should have done more, but really, I didn’t think it would get this bad just waiting an additional few weeks for that medical diagnosis. I guess I didn’t realize just how “tender” his confidence was. Now I and his school, we have to play catch up. We should have made appropriate changes IMMEDIATELY, not waited for more problems to come up. As soon as we found out Sandis was on the spectrum, we should have started specific interventions tailored to this diagnosis. It all made sense to wait then, but now it doesn’t make any sense at all.

My son doesn’t come by his confidences all too often or all that easily. He is quiet about what is hurting him, and he is loud about what he loves. You know that he is hurting much more when he is even quiet about what he loves. I let myself down when I let him down. I won’t let that happen again.

Thursday, November 09, 2006

Three Generations of Type 1 - From Mother to Daughter

How has diabetes touched me? How has diabetes touched my family? How has diabetes touched my mother, my father, my son, my daughter, my boyfriend, my friends, my cousins, my aunties and uncles? How has diabetes touched me?

I am so intimate with diabetes, that so often I forget it is there. I have such a close relationship with diabetes that I have been within touching distance of someone affected by it since my conception. Diabetes has so touched my life that I never thought having a syringe around the house was an odd thing. Diabetes is so engrained in who I am that it never even OCCURS to me to tell people I am diabetic. The truth comes out when they see my pump (pulled unceremoniously from my bra I’m sure), and were confused by my android hookup style I have going.

It occurred to me yesterday (all these realizations, my mind is full of Eureka! Moments) that with my daughter’s diagnosis, there are now three generations of Type 1 daughters in my family. My mom. Me. My daughter. That’s three generations, and I’m wondering how typical this is? There is an OBVIOUS hereditary factor going on with type 1 diabetes in my family. We don’t happen to have diabetes, we practically EXPECT to have diabetes. In fact, I do believe that type 1 overall in my family strikes the women and girls, not the men and boys. It’s okay though, because the men aren’t totally left out, they just get type 2 instead (Just when you think you dodged the bullet!).

My mom was diagnosed at age 11. I was diagnosed at age 13. My daughter was diagnosed at age 3. Wow. Three is just too young.

I wish I could be angry with diabetes, but that just doesn’t make any sense to me. I wish I could be bitter and unhappy with my association with this disease, but I just can’t. I don’t have the energy to be angry. Diabetes has always been there. Going down my family line, my Grandmother said that back in Norway there are gravestones from our ancestors that say on the tombstone “Died of the Wasting Away Disease.” Diabetes has ALWAYS been there. I’ve never known anything different.

Gracie will have an experience similar to mine as she will have to manage her disease throughout her life. Sandis will have an experience like my siblings did, just a little different because Gracie is so much younger than I was at diagnosis. You should hear their little mouths talk about “diabeedeees.” They work their little mouths and tongues and teeth around that word, and really they have no idea what it will mean in their lives.

Sandis asks me “When will I get diabeedeees?”
I say “Hopefully never honey.”
Sandis says “I hope I never have diabeedees and have to take shots Mom.”
I say “ Me too.”

Gracie tells me: “I don’t want diabeedeees.” (she follows this with a big HMMMPH, lip sticking out down to her toes and major attitude)
I respond: “Neither do I peanut, neither do I.”

We don’t have a choice. We are grudgingly making room for diabetes in our lives because if we don’t scoot over, diabetes will just sit ON TOP of us. And that sucks, really, trust me, it does.

Wednesday, November 08, 2006

My Reality Shift

I have come to the realization that in the past thirty days, my life and life circumstances have changed so much that I have actually experienced a reality shift.

A reality shift, for me, tends to be defined by the things that happen in my life, and a lot of times, they really tend to be health related. I'd say my first reality shift, where how I viewed the world and my surroundings changed dramatically, was after my sexual assault at age 13. My second reality shift, coming soon after the first, was my diagnosis with diabetes. Reality shifts after that would include things like: getting clean off of methamphetamines at age 18, going to college and failing MISERABLY at age 20-21, having my son at age 22, recovering completely from a burst appendix at age 22, having my daughter at age 24, graduating from drug treatment for fentanyl abuse at age 25........These are the major things in my life that have changed, at the core of my being, how I view, interpret, understand, and experience the world around me.

I believe that I can safely say that within the last month, I have experienced a set of new reality shifts. I have gone from having a set of wild and active, healthy young children to being a single mom of two (TWO!!!) special needs children. Two cihldren that qualify as having childhood disabilities and are protected from discrimination because of these disabilities. Two children that are going to intensely need an advocate, are going to intensely need a parent who is not just a parent, but a life support. Wow. It is just a lot to take in.

A couple of months ago, Sandis starting school didn't consist of whether or not the school lunch system can support a Gluten Free/Casein Free diet. A couple of months ago school was an exciting new adventure, rather than a LIST of highly inconvenient (although needed) doctors/psychologist/psychiatrist/therapist appointments. In September, I had no IDEA what an IEP is. Now I'm gritting my teeth trying not to be too overwhelming and abrasive as I am trying to ensure that my son gets all the tools he needs in school to succeed. It is so different than what I ever imagined, expected, or ever could have anticipated. So different....

Until this past week, things like training day care staff in the treatment and management of diabetes was not something that even crossed my mind. Until this past week, asking a diabetes educator if I can switch the injection site for my daughter's Lantus injection from her buttocks to her thigh until her skin heals would have been entirely out of context and my experience. Until this week, giving my daughter a shot, holding her down and physically restraining her to do so, never would have occurred to me. It just wasn't a part of my life or set of experiences. All the sudden, honeymoon is referring to something other than that marriage I've been fantasizing about for the past year (hint hint Bob!).

Things are just totally different. I feel fairly overwhelmed around 85% of the time. The times I don't feel overwhelmed, I am sleeping, or peeing (Who can think while they pee?).

I have been migrating to autism/asperger/pdd/parents of diabetic children blogs so much my mind is spinning. I read about children who are diabetic, who are past that whole honeymoon thing, and I really am not looking forward to more intensive insulin management for Gracie. I feel pinned to my job. What job wants to hire someone who has as many outside commitments I can't beg out of? Sure they can't discriminate, but even if I wanted to move to the cities and find work there, I wouldn't be able to shirk these responsibilities. I'd have to go a year without FMLA protection and I'd have a whole new school district to work with. Plus, I'd have to pay COBRA for myself and two young children. Now not one of us can AFFORD that lapse of benefits. I'm feeling pinned to Saint Cloud. I'm feeling pulled to the cities. After all, all the decent care for the conditions my children have is located where? In Minneapolis/St Paul.

There is a lot going on, and suddenly, I'm not caring too much about running anymore. I haven't been counting my calories for over a week, screw it, I have other things to worry about. My passions in my life seemed to have switched from running and islet transplantation and managing unforeseeable and unpredictable lows to diabetes advocacy, autism advocacy, getting the most out of your IEP, sensory integration, blah blah blah blah blah. Everything is changing, has changed.

And you know what? I realized today that not only have things been different lately, and not only has everything changed, it will never be the same again. I can never go back. I have had a complete reality shift. I am not certain I have had a reality shift as complete and as thorough as this since I first gave birth. This is that big. (If you are a parent, you understand just how big that is!)

So what now?

I learn how to change. It's funny how life changes and suddenly, something that was vitally important yesterday just isn't all that important anymore. Something came up. Lately, I have had autism and type 1 diabetes come up. I've decided that I am going to become a member of the Autism Society of Minnesota (and I'm even gonna pay the dues). I am also going to join the JDRF (and I'm not sure if I have to pay dues for that, anyone know?).

Just on a quick exit note, I'd love to share with you a note about Gracie. Her blood sugars are doing fabulously on just a 1/2u of lantus, staying perfectly between 85-115. I know it won't be like this forever but I'm crossing my fingers. Also, she has officially received a Type 1 Diabetes diagnosis. Tonight was her third night with a lantus shot. The first two nights I had to physically restrain her and she struggled so much and cried and screamed. It was pretty terrible. Tonight she laid down on my lap for me and cried a little, but did okay. She said: "Just a little poke mommy and then it is all over." I said: "Yep, Just a little poke and then it is all over." Until tomorrow, right?