Jacob'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's room on a "clean day"