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.


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.


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.


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.


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


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


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 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.