Take a Deep Breath

It's been a rough back to school for Jake. Going from playing outside all day with very few demands back in to class is hard on most kids, but there were also staff changes in his classroom in September, and lots of changes with aides at home. Not to mention a growth spurt and a migraine thrown in for a few days. Sadly, he has begun hitting himself on the leg repeatedly, enough to cause a little bruising. It kills me that we can't figure out some ways to soothe him out of the stim, but he's doing it when he is seemingly happy as well, so we've added it to the wonder and mystery that is our son. 

It's possible there has just been too much going on. Jake had his trienniel IEP, along with all of the psychological and developmental testing that goes along with measuring the minutia of a child with so many services. His teachers came to the house for a visit, which was lovely actually, something I wish every school-aged child could have at least once. After the home visit his teachers now have a frame of reference for all of the things we talk about, which I think is helpful since Jake is basically non-verbal. And the actual IEP went very well because those educators, staff directors, and the psychologist -- the OT, and the adaptive PE guy, and the speech pathologist, and all of the support staff, they all really care about my kid. I think they even like him. 

Then his Regional Center social worker came for her annual appointment, where we went over his IPP. That's his Person-centered individual program planning. Sort of a life-map plan for Jake, so that he can continue to get the services he needs from the state. This meeting also determines the number of respite hours we receive from the county. There are a lot of forms. This year there were some tears. The goals didn't change much from last year, and while I know Jake has grown and changed, the paperwork just won't ever tell that story very well. 

There was also a meeting with his IHSS social worker. In Home Support Services are monies that "help pay for services provided to you so that you can remain safely in your own home." His disabilities are measured from top to bottom, and his entire day is accounted for. We speak of his needs in quarter hour increments, and calculate, how much time does toileting take? cutting up his food? And does he still need help getting dressed? Can he get into the car by himself? Can he brush his own teeth? 

And lastly a visit with the doctor at CCS, California Children's Services, which addresses the cerebral palsy part of my child, as if we can just divy up his mind like that. We talk about wheelchairs and shoe inserts and medications, and how much he's grown. We talk about puberty. Puberty! The meeting takes place in the same room we've been going to for nine years, or is it ten? So we are half way through the services there; CCS stops providing services at age 22. Half-way through his childhood? already?


We are very blessed with kind social workers who really feel like advocates for our family, and a school district that truly honors IDEA, and a school that loves my child and wants to help him to become a productive adult. We have all, or at least most of the services in place that we need, and I can manage to paperwork and the running around that is required of each service because I can work from home.


But every time we have these meetings in a row, and they are always in a row, right around Jake's birthday, I am exhausted. Of course each meeting requires preparation on my part, but it's not that part that is so tiring. It's talking, for hours on end, about all of my son's deficits. It drains me. completely.


and when I'm that drained I'm sure Jake gets frustrated because I'm probably not "hearing" Jake as well as I normally do; much of his communication is subtle. At least twice during these meetings I had to speak about him, in front of him, which makes me feel awful, and it can't be that great for him. I normally speak without him nearby, or I remember to tell him who is coming and the things I will need to share with that person about his abilities, but I forget sometimes, and no matter how carefully I word things he might hear, it can't be that great to hear a list of all of the things you aren't good at. I'm certain that would make me more than a little agitated.


But we are done for awhile, so I can only hope that as I catch my breath and pull everything back together, Jake will do the same. 

Ya' Been Busy?

from my mom, after almost a week without hearing from me, and no blog posts to read:

hi,

I assume I still have a daughter??? have ya been busy?

Love,

Momma

my response:

Work presentation, finally got my hair cut/highlighted for first time since May, editing TPGA manuscript.  

Lucy lost her backpack (with awesome lunchbox, all of the cool boxes that actually fit inside, a new pleather jacket that she has worn once), several school functions. 

Triennial IEP for Jake, which is a very big deal with a lot of talk about deficits..reestablishes his being able to stay at Wunderskool. Then annual meeting with Regional Center social worker to determine eligibility of respite hours etc.; more talk about deficits.

Sister and boys in town since Thursday.

Jake very agitated for the past week or so, hitting himself, hard, on thigh and face, and not sleeping. Lucy lost another tooth. (I told her the tooth fairy can't come until Monday night.)

Seems like everyone has reflux . Screen door (in the back) has been removed because it broke beyond repair.

Every after school child-care/aide we have, has changed their hours. And now, backed up plumbing-snaked it four times.

That is the last SIX days. I wonder what Monday will hold (aside from calling the plumber at 8am)?

******* 

of course we did do fun things too, which I failed to mention in my email.

in those same six days:

I visited my son's classroom and got to introduce a new aide to how we interact with Jake.

I cleaned up the dining room table (my office) by putting things away or throwing them away rather than stashing the stuff somewhere else.

We went as a family to my daughter's soccer team. (Yes, I am the 'team mom', but I asked someone else to bring the snacks this week! I asked for help!)

We went to an evening fundraiser at Lucy's school and ate cotton candy and looked at cool cars.

I put some finishing touches on an awesome project I'm working on.

We had a prodcutive editorial meeting for TPGA, and we are well on our way to getting the book out.

My husband, sister, and I went out with friends to a new Tepanyaki resturant and practically had our eyebrows singed off at the Benihana-style grill table.

We home-brewed beer on Saturday night so that it will be ready for my sister's birthday.

We took all of our umpteen kids downtown to listen to music and play for free on inflatable jump houses.

and I took a nap.

Tie Me Up

I was telling my friend Pollyanna the other day that I just sort of felt like nothing was tied down in my life right now. Not that things are unraveling per se, just that, well I am used to having most things, even things that are hard or confusing or long term issues, I am used to having things at least tacked down enough so I can go about 40 on the freeway if I had to.

And lately? Lately it feel like it is all going to slide off..everything. I feel like I am behind, and yet going so fast I'm not paying attention, and I am busy accomplishing nothing. I am not getting to phone calls, not getting back to emails. My laundry, while all clean is PILED next to my bed.
Lucy was actually pretty sick this weekend with Hand Foot and Mouth...lovely childhood illness. She had 104 fever and threw up in my lap on Friday evening. She gradually got better and has now been fever-free for over 30 hours, so she perhaps she will sleep tonight and Decartes and I can get a full night's sleep.

Duh.

This week has been very very hard with Jake. He has been so "bad" after school, throwing himself around, unable to sit at dinner, screaming, crying, loose-limbed and non-compliant. Jake was so tormented and sad and throwing himself this morning that he:

• cried real tears.
• scared Lucy (not on purpose, but he was so loud).
  
• reduced me to tears during the sock and shoe phase of the morning.
• made Descartes yelp in pain from wriggling away whilst Descartes was still holding onto Jake (Descartes' back twisted a wrong way).
• made me so worried that I decided not to leave the kids alone to shower (Descartes had an early meeting).

Then I decided to try the (DUH!) migraine medecine. 18 mintes later he was calmly riding in the car to school. He was fine all day at school, mellow, (almost like a person who had had a mild seizure?). When he got home I gave him another Maxalt since last time it seemed to wear off around 4pm. He has been the happiest he has been in days.

Duh. duh DUH! One pill and he felt better. One pill. My poor boy.

I do not even have enough room in my heart for the guilt of having not thought of it sooner.

Hmmmm.. Let's Take A Look

this was a post from the other day.. I am a bit in denial right now about Jake.. I am so worried that I am afraid to write anything because I will need to think about it.


******************************************************
December 4, 2007
So we are going to get an MRI. He probably does not have a brain tumor. Most people don't. But I realized yesterday that just because Jake has global issues, seemingly impacting every aspect of his physical being.. even though he is all that and a bag of chips... this does not preclude Jake from afflictions which hit other "typical" kids...like cancer, and tumors and broken arms and acne. It is possible that something else could happen to him.

great.

I have decided not to worry until there is something to worry about. I have told everyone what to look for in terms of seizures, and double checked his room to make sure there is nothing sharp he could land on should he fall. He went to the neurologist. School is aware. There is nothing else we can do except wait for the MRI or wait for the symptoms to go away


went to school today and had no apparent problems. His foot is still dragging, but no apparent seizures.

Hiding

I am hiding in the guest room. You see, Sage and I traded "desks". I gave her this pretty awesome Singer sewing machine table (old treadle kind) and I am borrowing a nifty fits-diagonally-into-the-corner type desk. It was a brilliant swap since her daughter is enjoying the Singer table immensely, and I can actually sit in an office chair again while on the computer for the first time since before Lucy was born.

So I am in here reading my daily dose of blogs, and can hear everything Lucy and Jake are doing (Jake playing cars!!!!!!!) and Lucy laughing at the "Grouch News Network" sketch on Sesame Street.

It is gong to be a long week, so I must escape when I can.

I do love my children. I am just not quite nice enough to hang out with those particular children 24 hours a day for 7 days with only 8 hours of childcare.

Hey Jake just found me. He is tapping on the door and saying something.. and has now tossed his sippy cup (empty) against the door.

I am off to be a good mom. Wish me luck.

and I think I'm going out of my head

was seriously just going to write that Lucy finally went down for a nice long nap so I could get something done.. and I hear her CRYING... ARGHHHHHHHHHHHHHHHHHHHH

I am so frustrated today... maybe I am just sad because my sister Demanda and husband Jaster just left, and I just feel better when they are around.

hey no crying.. maybe cryBaby is going to give me a ten minute break to focus on work.


*****************2 minutes later *************
the dogs just barked at a phantom and she cried again.. maybe she will go back to sleep.

my head is about to pop off.