Friday, October 30

Do they know?

Sometimes I they know?

Things have been good here lately. But for the most part, I am just numb to the daily routine until we have a day like today.

Will has a cold. A bad one. So bad that it has affected his sleep which we JUST got under control. Last night he was awake from 4:30am to 6:30am. I do not know why, but each time this happens, it is two hours. Exactly.

Which means that I have now been awake since 4:30 as well. And that Will stayed home from school. Again.

Meanwhile, I received an email and voice mail from our county MRDD person answering my phone call yesterday inquiring about getting someone certified for respite care. A process which is not so easy. I found out recently that if we do not use our waiver money, then there is the chance we'll lose the waiver altogether, Medicaid card included. Without this, we'd be totally broke and in debt to our eyeballs.

However, using the money is not that simple. Lots of hoops to jump through.

At the same time, I am emailing and reading emails from four people on Will's school team to get his IEP to reflect the correct eligibility for services. More hoops. Waiting on the autism team to continue to hoop jumping process.

Also today I received a card from the school district's transportation office saying Will was going to be removed from the bus route due to inconsistent use. (We've started keeping him home every time he has a cruddy night of sleep.) Which meant I had to make another phone call to clear up the fact that yes, this is due to medical issues and yes, we still need the bus. Hello hoops. I'm jumping.

I'm awaiting a letter home from the school district to let me know that Will's dental form is out of date and he needs an appointment. Which I have not scheduled. Well, scheduled and cancelled due to illness. Not rescheduled.

I spent another 20 minutes on the phone with someone from his medical team figuring out what was going on with his sleep. (The result: Illness + mito dysfunction = stress on body which then = lack of sleep for Will currently)

All the while I mixed meds, fed kids, cleaned house....sort of, and found someone (thanks Grandma!) to come over so I can attend another child's Halloween Party.

'Cause, you know, I have other kids too.

So sometimes I they know? Do they ever wonder why we look so tired? It isn't just meds and therapies (Darn it, I forgot to do his PROMPT exercises today!). It is all of the paperwork, phone calls, and hoop jumping I have to do.

Most of my days are like this...though admittedly less intense. Do they know? Those people....the people that make the they know what our days are like?

I doubt it.


  1. Hey girl! I'm there! Keep your head up and keep trucking on and keep doing the best that you can do. Thats all anyone can ask of us. You are doing an awesome job. Try not to let all the constant stress knock you on your butt and just keep praying that the break (the plateu of good times) comes quickly.

  2. And even if they knew...would they care? This school year, there are new rules about absences. Alex normally never misses a day (he is one of the "lucky" kids with autism who has a great immune system), but this year we took him with us to Baltimore to attend the citizenship ceremony of a good friend from Vietnam. He missed 3 days. Then we had to move our daughter to Baton Rouge for her internship in OT...another day. One day (due to lack of sleep) he was tardy. So they had him marked absent for 5 days. This propmted a letter from the school's SW threatening to turn us over to Juvenile Court for truancy. Alex has seizures (not yet controlled) and we cannot leave him with anyone. The SW was cold...totally uninterested in the fact that we could not leave him with a sitter due to the seizures. Rules are rules. So we are teetering on the edge of heading to court because we cannot leave him. Do they know what our days are like? They do not care.

  3. Nope they have no idea. I had a pop up meeting at school today. Yay easy for other staff members with no kids. Of course no child care.... Well, you know how that went with 3 hungry kids that needed to nap. Seriously. Then everytime they cry ect. ect. Everyone looks at me like I'm some awful mother. Hey, you're the ones who want me here and you know I have three children.. A little frustrating I must say.

    On another note, I swear people just think you have all day to fill out forms and to recall people because they haven't done their job. I swear everything I've done lately had to be done twice because no one does their jobs. What the hey??? I would be fired!

    I feel for you. I cannot even imagine all the paperwork and hoops you must have, because the few we've had have about sent me to the funny farm. Hang in there. Drinks and fun to be had tomorrow!

  4. Sorry for your crappy day and I hope you guys start feeling better. Can't wait to see you in a few days.
    Love, Jen

  5. Cheryl-
    That is so crazy!!! Unfortunately, it seems to be a trend. I just a friend from Chicago post a truency letter on FB because her daughter was absent five days. She is very medically fragile! Hel-lo?!?!

    Sorry to hear that they are giving you trouble with Alex.