Overwhelmed

Sometimes life just seems so fucking hard. I don’t know where I am going to find the energy to keep doing everything. I keep looking for the hidden break. I keep expecting things to ease up, until one day, exhausted from another day of always being one or two steps behind in EVERYTHING, it hits me…..It will NEVER get better. This is my life, one day at a time, everything all at once, for the REST of my life. And not only that, the pressures will only increase. The expectations will only get higher.

Sandis gets sent home every month with a reading worksheet. Each time you spend 20 or more minutes reading with Sandis you initial one of the THIRTY stars. Last month, I sent it in incomplete. I missed five of the stars. I do what I can. Sandis’s teacher sent it back with big, bad, bold letters scrawled on it “YOU NEED TO COMPLETE!!!!” I thought about completing it, but realized that I would never finish February’s stars if I tried to complete Januarys. So I threw it away. Whatever.

I realized today, while I sat in my car waiting for my coworker to get there so I could go inside and work, that perhaps I feel this way because I start my period in six days. I always get wired up right before my period. Anxious. Raw. Feeling like a failure.

When am I supposed to do everything? Really? I have so many things I need to do so my children grow up into wonderful adults (or rather continue to live as children in some cases) that I have no time to cook, clean, iron, launder. My house is falling apart as I’m running from one appointment to the next. My job, (haha, job)…..I worked 22.9 hours last week. Need I say more on that? And then, my relationship with Bob. I am so fucking overwhelmed that EVERYTHING he does is rubbing me the wrong way. There is no way on earth he can ever understand how I’m feeling. I try to explain, but it doesn’t change how I feel.

I feel like I can’t be overwhelmed. I don’t have time. I feel like I want to give up. I feel like I will never have help. I feel like even if I ask for help I’ll never get it. Even the respite seems too far away, seeing as how I have no clue when I can actually use it, or even how to use it. And once I get the respite, I’ll probably want to use the time to clean the house.

I need to focus more on my blessings and my gratuity. I have been blessed with two wonderful children. Being their sole provider, advocate, care attendant, nurse, mommy, love, their EVERYTHING has me totally running on empty. How can I be a good mum when I feel like this? How can I be a good mum when their antics have me wanting to scream rather than snuggle?

Bob keeps mentioning that I don’t have fun anymore. I don’t even know what fun IS anymore. I wouldn’t know what to do if I had the time to fit in fun among my mile long list of to-do’s. I don’t know what to say to him not thinking I know how to have fun. All of it makes me want to weep, to be sorrowful and mopey. I am only equipped with so much. I can only do so much. And how do I communicate to everyone that I have too much on my plate?

I just so wish I could give the diabetes back. I wish I could trade in her legs for a better pair. I want her to be healthy. I don’t want to know everything I know. I didn’t ask for this. I need to feel sorry for myself. I need to cry over lost expectations. It has only been a few months and it is all still so hard and I don’t know how to make it different.

There is an immense physical pain that is a result of my grief. It grips my chest, my throat, my teeth, my temples. Have you ever felt this? The onslaught of your emotions as a physical sensation?

This too will pass. It just has to.

Resident Ketones

Gracie had some higher blood sugars through the night. Not through the roof holy shit high, but in the 180's, which for us is pretty high. Gracie complained of an upset tummy starting at around midnight, but I just told her to lay down and rest. She did on the floor by my bed, and then at 4:30 this morning she ran to the potty and puked all over the floor (at least it wasn't on carpet). I checked her blood sugar and she was 140. I checked her ketones when I got her to pee, and moderate ketones. Damn. My peanut is sick.

So today I have been feeding her ginger ale, testing her blood sugar every two hours (thankfully fairly normal) and testing her ketones (still at small). I called her endocrinologists office just to make sure I'm doing the right thing and discuss other sick day stuff with them. They told me to call back later this evening as well with an update.

I then asked them to mail me a letter stating that I must monitor Gracie's diabetes when she is ill and that I consulted with them today concerning her diabetes. Here she hesitated. I explained to her that I needed this for FMLA at work. I don't have any sick time, and anyways, any day care I know of willing to take in sick children isn't versed in type 1 diabetes sick day care. I also can't see taking her in for a doctor's appointment solely to get a note, you know, copay be damned? I pay 20 bucks to get off work? I shouldn't have had to explain this to her. She should have responded with an
"Absolutely! I can't imagine what it is like negotiating chronic illness, normal illness, AND a full time job (not to mention how your job chooses to interpret FMLA law!)! I'd be so happy to help you with this letter which takes so little of my time to scrawl on a prescription pad or letterhead! It was my pleasure to help make your day today and your next day at work a little easier!"

Fortunately, she acquiesced, and I will be receiving that letter. It is super stressful to have no sick time at work and have to fight for everything possible to count as FMLA. Especially considering I need a doctor's note indicating diabetes or orthopaedic problems to have the FMLA apply. Every single illness Gracie has from the date of her diagnosis will require extra diabetes management. It is just how it goes. It sucks to have to beg for a letter every time this comes up. It isnt that I am abusing the system, it is just I have no other choice. I've used up all my options. And THAT is why we have federal FMLA protection in the first place. So why are these doctors and nurses so freaked out to help me use it?

Anyhow, wish us well on the ketones dropping front. Last I checked they were small, no longer moderate, so that is progress eh? All that gingerale must really be working....Although it seems so backwards to push sugar when their blood sugars are resistant from ketones....Here I am diabetic 15 years and I STILL don't get the ins and outs....

Gracie’s Adventures in “Bob-Town”

Yesterday was Gracie’s three month post-diagnosis endocrinology appointment. This appointment is much anticipated, as it is in “Bob’s town”. Bob’s town as in Saint Paul. It is a drive. Normally it takes an hour and 15 minutes, but add some inclement weather, or rather, the accident alley the freeways became yesterday due to black ice, it took two and a half hours. This is always fun. It seems to be a theme for it to take ridiculous amounts of time to reach the Children’s Hospital in Saint Paul. Last time we went in November the drive was made in pouring AND freezing rain. Fun stuff.

So on to the news. Gracie is doing fabulously. She has grown a full inch in 3 months since beginning her insulin regimen. Gracie went from barely being on the growth scale for her height to around the 8th percentile. That is huge as Gracie is technically eligible (or rather was) for growth hormone treatment due to her size! Who needs growth hormones when you have insulin, though? Her a1c went from 5.5% to 5.3%. I don’t think I’ve EVER had an a1c that low. But, considering she is in early honeymoon stages of diabetes, that is what we should expect!

Gracie’s endocrinologist talked a little bit about celiac with us this visit. She is concerned because of Gracie’s height, but because Gracie hasn’t been having gastric discomfort much since beginning insulin, we chose not to test for celiac this time around. We WILL be watching her growth very closely. One item they noted was that although Gracie grew taller, she gained no weight. Is this normal? Who is to say. Gracie has NEVER grown normally, so I think she is on a different dimension of growth normality. It all boils down to time. We will know more in time as we closely watch her growth.

We increased Gracie’s lantus from ½ unit to 1 unit per day. The doctor explained to me that because Gracie’s morning blood sugars are consistently over 100, she’d like to get them a little tighter than that. She also explained to me that Gracie’s blood glucose targets now, when she has so much pancreatic function, will be much different than they will be when she is on short acting insulin. She is hopeful, though, for a few years of only lantus. I told her that I hope Gracie NEVER needs short acting insulin. I laughed (inwardly crying) and told her I knew that was foolish fantasy. Gracie’s doctor was so nice, though, and she said “No, of course it isn’t foolish. If you don’t have hope, what do you have?” It was so obvious in that moment that she regularly deals with families and children with chronic illnesst. She is so right and she set my heart at ease. It is okay to hope.

Later in the day, Gracie had her physical therapy appointment where she received her own pair of Theratogs ($400 dollars worth of straps and Velcro). I have been anxiously awaiting these things. They help to rotate Gracie’s hips and legs out. They are worn under her clothes during the day. It is amazing to see my daughter standing with toes pointed forward. It is amazing to no longer see her legs scissor when she walks. The combined use of the theratogs with her braces has made a huge difference in her gait. She gets tired more easily now, but she is in a lot less pain. I haven’t been hearing any complaints of back pain since we got her first pair of braces, but she has been telling me that her knees hurt. This makes sense as her knees often hyperextend through normal activities. Good news, though, is that she is being reduced to only one physical therapy appointment per week! YAY! The theratogs are going to do the work for Gracie all day everyday that physical therapy was attempting to do in twice weekly visits. I think that is a wonderful 400 dollar investment! It makes time for that Occupational Therapy that we are all expecting to begin (once they get the diagnosis straight in the request for evaluation….whole ‘nother medical story there!)

After therapy we ended the day going to an early education program I signed up for called “Family, Friends, and Fun.” This is a great little program that runs on Wednesdays from 6pm – 8pm. It is designed for parents of children with special needs. They provide a meal at 6pm that you eat with your kids. Then the kids are carted off to be with other kids in their age group for some choice time. They are with kids that have special needs and the siblings of kids with special needs. It is a great group, and the resounding theme is “Children are Children first, and a diagnosis only after they are children.” The parents then cart themselves off to hang out together for an hour and a half. It was great stuff to be with other parents of kids with special needs. Their children had a variety of special needs, but what I got from it was this: I am not alone. These people know what it means to have six appointments a week and then more to do at home. These parents understand what everyday is for me. I am not alone. It was awesome. I’m trying to get Bob to come one week. I think he might enjoy it too.

So, all in all, long and exciting day yesterday. And I was so blessed to have it!

Rewards for Hiding and Rest for the Weary

My son had a rough day at school today. There was a substitute teacher today. Substitute teachers are usually bad news for Sandis. This isn't because Sandis is belligerant and purposefully bad, but because they just don't know how to handle Sandis. It isn't really their fault though. Due to the fact that Sandis does not yet have an IEP, all the special little Sandis rules and regulations get lost in the shuffle when his regular teacher isn't there. Rules like Sandis always holds the teacher's hand in transitions from one room to the next, and other rules that state Sandis cannot use the big restroom down the hall only the small restroom in the classroom. They seem like such little things, but when not communicated, disaster strikes! Sandis's teacher is a smart woman. She made those little rules out of necessity.

Today Sandis hid from his substitute teacher. He went with the class to music, and although he struggled through music, he made it through. But....(and a big but here!) he decided not to join the class in the commute from music room to class. He apparently lingered behind his classmates and hid when the perfect opportunity struck. His poor substitute teacher with 22 other students entrusted to her did not notice he was missing until almost a full hour after music class. (MY! MY! MY!) Sandis also was given free reign to use the big restroom down the hall. This resulted in a toilet flushing, light switch flicking, animal sound making frenzy. And yes, frenzy would be the correct word for it. There is a good reason I ALWAYS take Sandis with me into the Women's Restroom.

Long story short, I received a call from Sandis's Behavior Interventionist. Ahhhhhhh! The joys of receiving behavior related phone calls during work hours from the school! He kindly explained the situation to me, stressing that Sandis had caused quite the stir when he had turned up (or rather failed to turn up) missing. I listen to the story, consternation in my voice, but heart a leaping and stifling a chuckle. These people DESERVE this. Don't get me wrong, Sandis doesn't deserve the harm that comes to him from being given the opportunity to misbehave in such a flagrant manner, but......I requested special education evaluations to begin in OCTOBER! I needn't remind anyone that it is FEBRUARY! and evaluations are FINALLY being completed this week. They have denied (or rather not begun) accommodations for his special needs because of:
1. the school psychologist's vacation
2. their inability to get their shit together
3. their REQUIREMENT of written request (given in November) before accomodating my verbal request for evaluations
4. further postponing ALL EVALUATIONS until receipt of written proof of Sandis's diagnosis

Need I say it again? They DESERVE his behavior. He wouldn't for the life of him get away with that shit at home, but then again, at home, his sensory needs are accommodated. He is NEVER expected to have the normal sense of personal safety that other children may have. Sandis is almost CONSTANTLY under 1:1 or 1:2 supervision at home. He doesn't have the opportunity to sneak away and wreak havoc at home and in the community. His needs are met in ways that the school hasn't been able to do.

So you know what? When Sandis throws a book at a fellow student, destroys something in a fit of aggression (more than likely caused by sensory overload), spits at the teacher, throws himself down and indulges in a tantrum because he was tagged in PE.....I think he needs to do this because they need to see the behavior. And they need to address the behavior in the IEP and make appropriate accommodations. And when they do, we will all be smiling. You know why? We will be smiling because Sandis will have appropriate supervision and won't sneak off when no one is looking (my ever wandering boy). We will be smiling because Sandis will be able to complete all his work, and his teacher won't have to sacrifice helping all the other students so she can devote extra 1:1 time with Sandis. We will be smiling because Sandis will be on an appropriate diet of sensory stimulation that will curb his spitting, hitting, pushing, kicking, and self injurious behaviors at school We will all be smiling because of the accomodations they will make.

And until they do that.....I'll be laughing at their misery. And I'll be writing a whole lot of letters.

On another note, I have been approved for one weekend of respite a month for three months. Depending on my situation with Sandis's SSI application at that time, they will reevaluate my case.

I have not had babysitting since October, and with Gracie's diabetes, I can't afford and don't even KNOW a local person who is willing to take on the fabulously busy son and the equally busy but health challenging daughter. This respite, my friends, is truly going to provide the rest for the weary (the weary person here is me!).

If you ever question whether God provides, think of this. I have been given a weekend a month of free babysitting for my son. And you know what? I can split that up and use it one night for both children a month. Do you know what I'm going to do?

I'm gonna go on a date with Bob.

Books and Other Such Things.......(Our Weekend)

In light of my recent dilemnas surrounding money, I did the only reasonable thing this weekend to ease my heart. I went shopping.

Ya well, so perhaps it was not the wisest thing I've ever done, depleting my savings account further, but it sure felt good. I bought books. Bob and the kids and I visited Barnes and Noble. Due to the fact that we have no cable and thus no televison channels at all right now I have been reading much more. And I have been craving some fiction. Easy fiction. Not classic fiction I can read a thousand times over, but easy fiction that will ease my mind after a long day. So I bought the five Anne Rice books I have not yet read, and the Davinci Code. I imagine that for the next month I will have plenty to read. And I only spent fifty bucks....(aack!)

It has been ridiculously cold this weekend. Stupidly so. So stupidly cold that it killed my car. I love waking up in the morning, heading out to the car with the full inentions of heading off and away to wherever I intend to drive, and am met with the slow, cold, sluggish uffda I just can't make it from my car. Fabulous. Really. Two days in a row. So I bought a battery. An expensive one. The most expensive battery I could find at Walmart. So, let's hope my car continues to start and the 60 some dollar battery I invested in has many many returns in successful car starts.

It was Sandis's week at church today. Things went well, but I was less prepared. I tempted fate and we went to church without a brush. It was much harder. Next time I will bring the brush and I will brush before we go, and anytime inbetween. It is awesome how much my son loves church. He is not afraid to enjoy just being in God's house. Sometimes I really wish I could find that same joy in his sanctuary. Maybe that feeling is lost with age. I hope not.

IEP LETTER #2 - Further Concerns

This is IEP letter #2, which they will receive next week. I’m making sure I leave a trail of my regular concerns. We haven’t had even our first IEP meeting yet, but I’m so looking forward to it!

February 2, 2007

Dear Katie,

I have had the opportunity to have a couple of discussions with Sandis’s teacher this week and I have a couple of concerns that I believe I touched on in my last letter but wanted to go into a little more concerning one specific situation.

On February 1, 2007 Sandis became very overwhelmed in class and threw a book at a student. His teacher walked him to the office to have some time to regroup and on the way to the office he kicked the wall. Sandis has had several instances at home as well where he gets very overwhelmed and anxious and responds aggressively. I am concerned about aggression against other students, himself, and property. Sandis when overstimulated, anxious, and upset has quite a bit of trouble thinking things through and handling impulse control. I believe this is injurious to him in his interactions with his peers, injurious to his self-image, and also hard for the teacher, as she cannot always intervene with Sandis before he gets to this level of frustration.

I feel that it is important that we address Sandis’s sensory needs on a regular schedule along with developing a plan to help address unwanted and aggressive behaviors such as these. I also believe that Sandis needs to have consistent help determining when he needs a break and go to a quiet area to regroup.

I have been extremely impressed with how wonderfully Sandis’s teacher, Mrs. Brown, has worked with Sandis. She does not deal with Sandis in a recriminating matter but understands that Sandis’s behavioral problems are rooted in things other than purposeful defiance. I do have some concerns that with the number of students in Sandis’s class that she simply does not have the time to give Sandis all of the extra help he needs, but I know that this concern will be addressed in his IEP.

Thank you so much and I look forward to scheduling our first meeting to review the evaluations!



Sarah
sarahiamslh@aol.com

Government Assistance? What?

After work and therapy (Occupational and Physical) I decided what the heck and picked up some Chinese food and some pinot grigio (I have a headache). I used my reliacard to purchase the wine, which is a debit card that accesses child support funds deposited. The clerk asked me what the yellow reliacard strip at the top of the card meant and I told him it was child support. His remark back to me was "Oh, I figured it was some type of Government assistance."

What the F*&*??????? Since when did child support become government assistance? Honestly, when did my child's father paying me a measly butt crack thirty bucks a week (if I'm lucky) become equivalent to government assistance?

So....I told him that child support isn't government assistance. It is "parental" assistance, which has nothing to do with government and everything to do with personal responsibility and accountability. (I can't believe I found words that good when I was that irritated.)

His response? "Well I've seen guys with this card too, so it can't be just child support."

Where is this guy from anyways? Pluto? So now child support is government assistance and on top of that men can't receive it?

I'm in my own little world of disbelief. But...on a lighter note, the pinot grigio is FABULOUS :)

As a little diabetes aside, miss peanut had her highest blood sugar thus far with a 333. I was ready to freak out and call mr. endo man to crank out the novolog, but I decided to wait an hour, and it had creeped down to 249. Feeling good about the drop, I decided to wait ANOTHER hour (but I only made it 30 minutes) and she is down to 128.

I'm certainly not happy about cracking the 300 mark. In fact, if I didn't have such a splitting headache I'd be a bit more concerned. But I'm grateful she worked herself down. It just makes tonight a little easier.

one day. One day at a time.....