Monday, January 25, 2010

State Of Mind

jacob on a dirty dayJacob's room on a "dirty day"

I was passing by the boys' rooms the other day when I saw further proof of just how different these brothers are. These doors (photo above and photo below) are side by side, separated by all of 6 inches. Jacob is on the left and Andrew is the room to the right. Jacob quite clearly finds comfort in order and Andrew finds it in chaos.

Today, I find myself channeling both the boys. On the outside, I am sure I appear much like Jacob's room. I am clean (took a shower first thing this morning), I am organized (there are several appointments and important phone calls on my plate today all well planned), and there is just a tiny bit of "unkept"-ness to me too, like the unmade bed there (it is raining today so I am bit weathered, shall we say, with droopy hair). On the inside, I am feeling like Andrew's room, and unlike him, I am not finding it comforting. I have millions of thoughts in my head today, like those millions of legos on his floor, and lots of random wants too, like those half open dresser drawers of his.

I haven't talked much about Andrew lately. For those of you new to the blog, Andrew is my middle child, 10 years old, in 5th grade, and he struggles with mental illness, specifically: early onset childhood Bi-Polar Disorder NOS. There are a couple reasons I haven't mentioned things lately. First, so much of life with Andrew feels like the movie Groundhog's Day... the same thing over and over, I don't want to bore you and I am not looking for a dozen you're-a-wonderful-mom-comments. Second, my blog is really a form of personal therapy for me, and more and more lately, I find myself wanting to keep this little place all to myself. I want to try to keep it positive, and separate from those things that have me down at times. Plus, I usually get a few emails after one of these posts suggesting I should be medicated, those I can do without (don't take this the wrong way, if you sent me an email, you know if you were tactful or if you weren't... I am talking about the not tactful ones). Also, I have said before, that for some reason, I feel kinda guarded lately. Letting everyone in to see this side of my life can be hard sometimes. Just sometimes though, because anyone who knows me knows that I am very very open to talking about anything under the sun.

At the same time that I have all the reasons why I don't talk about things, I have reasons I feel I should. So many of you have followed this blog from the beginning and you were there when Andrew was first diagnosis, and you were there through the struggles in school, and the suspensions, and all the medication nightmares. I think there must be those of you out there worrying about him and part of me wants to set your minds at ease. Along with the "you need to be medicated emails" are the very thoughtful and heartfelt ones that tell me I am not alone. That there are those other moms out there that have children with mental illness too or strong people that share they struggle with it themselves. I can't tell you how much I appreciate it when someone shares their stories with me. It always brings tears to my eyes and hope to my heart. Unfortunately, I don't always respond to them because I am left with feeling so overwhelmed that I don't know what to say.

I am babbling again. Anyway... there is a lot going on right now with our little boy. Meds were changed again back in December. We had a "good" month or so, mood-wise, but he has been steadily declining again. Doctors have said on several occasions that we may be dealing with an Axis II personality disorder, though it can't be officially diagnosed until age 18. He is on very strong medications (lithium, abilify, and lamictal) and the fact they aren't working has us confused and shaking our heads, and trying to find out what our next steps are. School is doing everything they can for him, and tomorrow we have his IEP initial determination meeting. And no doubt, that is what has me wanting to talk today, and makes up about 900,000 or so of the million thoughts in my head). Right now he is struggling with ELA (english language arts, aka: reading and writing), and testing showed his reading level to be between mid 2nd grade/early 3rd grade. NYS testing here is scored on a rating of 0-4, we found out on the Social Studies test, Andrew was the only 5th grader in the school that scored a 2. Ugh.

We aren't fighting for him alone anymore, and that is something exciting to share with you. As a result of the Home Based Crisis Intervention program we took part in back in Sept/Oct we were referred to a group called FACT (family access crisis team, I think) that has set us up with something called "Care Coordination" for Andrew. It should be starting in the next couple of weeks. Basically, we are assigned a social worker who will create a support team with the sole purpose of making Andrew's life more "successful". We will find areas he is struggling in and come up with ideas and plans to attack that struggle. And not just with school! Andrew struggles socially too, so there will be a "skill builder" for him to help show him how to make friends and act in public... not that we haven't tried, but maybe it will be better coming from someone else. We are told there is "respite" for us too. I truly can.not.wait for it to get started.

I will be sure to share with y'all the results of tomorrow's IEP meeting. We have a great child advocate that we have been paired with that is an absolute pit bull and wonderful source of information. But still, keep us in your thoughts. We could use all the love we can get.

andrew on a clean dayAndrew's room on a "clean day"

19 comments:

Anonymous said...

Hi Kerry! I looked at the picture of your son, Andrew's, room and it definitely looked like an exact replica of my son's, who name is also Andrew, when he was younger. He always had legos in heaping piles on his floor with dinosaurs everywhere. I struggled with him through elementary and middle school and he was diagnosed with ADHD, but the medications did not really work and now he's 17 and doing just fine. No med's, no problems, no teachers getting on my case about my son's behavior and work. I feel for your family Kerry I really do. I hope you find the right combination of meds for him, and maybe a possible secondary diagnosis which may not be detected yet. Best wishes.

Kellie C.

mairedodd said...

good luck with the iep - ours is in may... and they can be incredibly stressful... my guy is in 5th grade too and will be moving into the middle school - am feeling a bit lost with that...
but - totally back to your family... i am so delighted the in home program is working... respite should never be underestimated!! most of all, i am glad that your family is finding itself in the folds of a support system that is used to dealing with schools and people... i am so glad that andrew is going to get some extra support with socializing (and sometimes coming from someone else it does make the difference - we all know that!)... your post brought tears to my eyes for many reasons... and joy to my heart for the progress being made and the glimmers of hope... and as an aside, my work table looks like andrew's room... it just works for me...
thank you for sharing an update... but i also understand the need to have a 'place' all your own...

sandi m said...

Kerry,
Yes, I've been reading you from the beginning. My thoughts are with you and your family. I so admire anyone who has to raise children in today's techno world. Let's hope you have Kellie's fortune and Andrew will grow out of this.

Cindy said...

YIKES! That messy room would make me crazy. I am definitely an 'order' person. Disorder and chaos make me twitchy.

My children were exactly that way....disorganized and I hated it. I am so glad they are grown now. HAHA

Alice said...

Oh my, all three of my children's rooms look something like Andrew's room. The 'toys' may not be legos, but most days you can't walk in without fear of stepping on something. I'm not a neat-freak, preferring to spend time with my family rather than worrying about a spotless house. But I do expect a certain respect for order, so I'm not sure where the kids got the 'messy gene'.

One can never know what struggles another endures without walking in their shoes. I'll be praying for strength for you, solutions for your son, understanding from others, and peace for all.

deehebard said...

...simply sending love your way....

Di said...

I hope it all goes well for you and your family.

Silver Parrot said...

Your story really touched my heart. It really puts in perspective for me that no matter how hard I feel it is for me being a single parent to a 7 year old boy who, at times, struggles with some behavioral issues, that things really could be far more difficult. I think it's great that you have a support team gathering and I hope they are able to help with everything, but particularly with the "respite." That's so incredibly important! Will keep Andrew and your family in my thoughts!

RockerJewlz said...

I like that you said how each boy finds comfort. A lot of parents wouldn't see it this way.

I wonder what it is about the age of 18. I have a family member who became schizophrenic at 18 and another who became bi-polar at the same age.

Yvette said...

Yikes, I thought picking up my 2 year old's Duplo lego was a job - perhaps he will go off Lego before he gets ig enough for the smaller size!

Barbara Collins said...

Hugs. You are doing great!

Kerry said...

Thank you so much for taking the time to comment today everyone. And for respecting that I didn't wait to hear you-are-a-wonderful-mom comments.

I appreciate your support so so much.

Pretty Things said...

Zack's bedroom is the top one, but his playroom is the bottom one. Sometimes he has a box upended only to have a carefully laid out pattern of cars right next to it.

Zack did well with the socialization help, so I am sure Andrew will, too!

rosebud101 said...

Kerry, I'm a former special ed teacher. My heart goes out to you! I'm glad that there are interventions in place for you already. That is wonderful! You are in for the ride of your life, and your life with your son will never be dull. I'm praying for your family. Hang in there.

Jennifer Cameron said...

My bedroom looks worse than Andrew's...

crymson said...

good luck! Sending some positive vibes your way!

Laura Blanck said...

Dear Kerry, first of all I send you a super big hug! And if this makes you feel better, let me tell you that many times my kids room looked like Andrew's, and they never had his same condition... I'm sure that many moms will feel identify with your photos, and even though your words describe a very particular/personal situation, many of us could find similarities... There are many kinds of personalities out there... I say to myself that things happen for a reason and there is always something good coming our way, embrace acceptance!
Your friend, Laura.

Nicki said...

We just renovated our house this year, before my baby was born and therefore we moved all things that were "too much" to the top floor. So you can imagine a room with boxes (among those al my beads)- I think 5 boxes alone with old shoes that somebody (aka me) has to go through. So now the baby is there and we are planning to have her eventually live up there. Can't wait until that happens so I can blame the mess on her ;-). So sad I live on the EU side of the pond - I love your blog and I think we could be great friends.....

Mary Ellen said...

Hugs to you!! (My boys' rooms look EXACTLY the same!)