Friday, March 18, 2011

Neuro-psychology Evaluation Begins

Wednesday was our first appointment of two, 3-4 hour appointments for Garrett to have an evaluation with a neuro-psychologist who will then tabulate his testing scores and combine info to give us recommendations for Garrett's schooling and therapies.

It was a very long day. I thought, of course, that since she would be evaluating Garrett without me in the room for up to three hours, I might actually read a book a dear friend sent me. But nope, the doctor came out with three HUGE evaluations I had to do about Garrett.....and then there were two huge packets for me to complete for our future appointments with developmental pediatrics and neurology since we are new to this area and need those established. No reading. The young lady who is the neuro-psychologist offered a few very helpful pieces of advice regarding Garrett's IEP that expires mid-April as well as some things to ask about in his parent-teacher conference that was later in the the day. She also recommended some books for me to read. I ordered them as soon as I got if by some magic source, my simply ordering $47 worth of books might cure my child and make tomorrow better. Disillusionment once again. I digress.

Meanwhile, I needed to get Garrett next door from the appointment to the hospital lab for urine and bloodwork in preparation for next week's nephrology appointment for protein in Garrett's urine. No luck with the urine collection, but lots of luck pooping. I drive to the Medicaid office to turn in some further paperwork and then head to his school. He starts screaming, "I having a BIG POOP!!!" like he is scared for his life. Well, I should have been scared for mine!! When we finally pulled into his school parking lot with no time to spare, I unbuckled him, and as he climbed out of my Yukon and put his first two steps onto the pavement, I noticed puddles....of something brown....and a little smelly......OH MY GOSH, I have NEVER seen poop like that. It was running out from his shirt tail from his shoulders, down, all the way down the outside of BOTH legs of his nice, new khaki pants, pouring onto the pavement. Seriously? I got him to stand still by the car since we were by a very non-busy street, while I got wipes from the back of the car and tried to drain the poop enough from his shirt to be able to let him walk further. I walked into the school in tears where his angel of a teacher, Debbie, met me with a smile......and then a quite exasperated look!!! She took us to the restroom and this angel of a lady got on her hands and knees and started helping me undress Garrett before I could say a word.

The day had already been a very early start, a PhD telling me my son does NOT have Autism....okay, one more disagreeing professional...then to the VA to turn in some papers for Grouchy, then to the lab, then hanging out in a store waiting for Garrett to pee in a cup, but no, so then putting the urine bag on him and then is getting poop all over it. Gave up on urine for the day. Then to the Medicaid office where things were WAY too cluttered and time-wasting for just needing to drop off papers, then the poop, then the conference with good info but the feeling this battle is all up hill.

The neuro-psych did advise us to ALWAYS remain calm with and around Garrett. No physical punishment, no raised voices, no exasperated looks, nothing like what we are feeling on the inside when we are sooooooo frequently frustrated. I know she is evaluating him, but I get a sense she is going to continue her comments like she did that day........he has an abnormal brain, nothing we can compare it to, unique, unusual, going to take patience, time.......
I felt exhausted over the whole day, of course, then it was home to get the kids and hurry back to AWANA......and a late night out for that. My sweet husband realized the stress. I guess he could see me aging by the second, and offered to keep Garrett at home to get him in bed. I gladly accepted, although it was the night before Grouchy had to leave town for work. Hhhhmmm. We had talked about takign kids to AWANA and a date, but I have to tell you that our dates are, well, just not happening anymore.

We did take a positive step in the direction of our sanity per our own feelings, my therapist's input, the neuro-psych (who reminded us we are not hiring babysitters any longer, but respite we can have time away from this high needs member of the family) by hiring Ali's sister Shelby to come to our house after school each day and help out for 2-3 hours. Money. Grouchy tells me I have to let go and just know it is necessary to do these things or we will not make it through this with any amount of enjoyment or sanity. It's just against what I ever planned as a mom. I want to be WITH my children. I don't WANT to have to pay someone else to care for them. I AM THE MOM......shouldn't I be able to handle it?!?!? Truth is, I cannot and I am beginning to let go and see the benefit. Shelby isn't charging much at all, but it's just such a drastic feeling step to essentially hire a nanny to help me. She is a complete doll, and I trust her totally......Andrea, read this to her...ha!!!!!......and when she isn't needed to help with Garrett, I will get her to help me with household things or outdoor projects like MOVING ROCKS....ha!! No, I won't do that. But having Garrett SAFE where he can meander and play and go in and out of the house while I help the girls with school things, go for a quick jog, work horses or heifers with the kiddos, or just be home not having to devote every single second of Garrett's awake time to his constant supervision....whew, the weight has lifted some!!! I am excited about this new deal and hope it will help us all feel a little less stressed.

Spent today trying to get Garrett to pee in a cup again....remember he isn't potty trained at all. He finally did it at a friend's home during playdate, but then he got spazzy and slung his arm at me and knocked the specimen cup out of my hand and across the bathroom. I wanted to scream and get mad, but instead I started to cry. I just stayed there squatting in front of half-naked Garrett and cried. I don't think he has ever seen me cry. And I didn't plan to. It was just such a physical example of the defeat I constantly feel with him. But interesting things happened. He immediately got calm, rolled his bottom lip out, leaned to me for a hug and started sobbing!!! He asked me, "Why you cry?" I told him I was upset he made us have to start all over when it was a three day chore already. He said he was, "sa-wee" and loved on me. Then he peed in the cup even better. Sounds great, but we had about 30 minutes of a window to get it to the lab that was 35 minutes away, and oh, by the way, playdate wasn't over and I had to be mean mom and drag my kids out early. We dropped off the trophy-pee and headed to get take-out dinner, went to the YMCA to eat, then let Addie climb, Ainslee play and Garrett go into childcare for an hour.

And tonight, completely worn down in every way, I can say I never lost my cool with Garrett. He was not any better than usual, and was pretty tough in the car, but I held my cool.......on the outside. I now know why man invented the flask.....I could use one!!!!

Tomorrow, while usually a new day, new hope, refreshment from rest and sleep, is coming, but without promise of those things. It's like Groundhog Day. I know it will be tough again. I know I will want to scream and want things to be better, and I have officially realized "it ain't happen in'!!" But it will be tomorrow. God made it. God will take us away to paradise someday.


1 comment:

  1. My dear dear Mrs. Clara-leigh...words cannot begin to express how much I want to reach out and give you a hug. I don't even know where to begin...first of all, i apologize for the time that has gone by since I've last gotten to speak with y'all. I was recently reminiscing some of my favorite highschool moments with my fiance' and you and your amazing Grouch came up often. It was that conversation that brought me to your facebook page...and ultimately to this blog.

    I want you to know how much my prayers are with you and yours right now. I am sitting here in the office with tears down my cheeks...wishing with every bit of myself that I could take everything away for y'all. It is a foolish notion, but know that I am thinking of your family today.

    whether you mean to be or not, you are an amazing writer. I want to thank you for how vulnerable you are on this blog...i know it is difficult, but that transparency alone speaks volumes about your character.

    I pray that you and your family may have peace through everything that is going on right now...i encourage you to keep on trudging along this road that can sometimes be so weary. I know...with every fiber of myself that God will take y'all through this. Know that no matter how far away I am here loving y'all. I know that if anyone can make it through such trying times you and Oscar can. I pray that you send my love to your family, and i would love to catch up with y'all soon. You are all so amazing. If there is anything I can do...even if it's just correspondence or prayer, let me know.

    My number is 225 572 8227 and my email is

    Again, I'm praying for y'all and I miss y'all dearly.

    In Christ,
    Zach Sanders