Sunday, March 23, 2008

Comfort Levels

The developmental pediatrician phrased things in a way that struck me: she said she felt "comfortable with an Autism spectrum diagnosis." It's just because I'm a word girl that I turned that phrase over and over so many times. Of course, I know what she meant.

The doctor, like many, sees that the rooster's issues are atypical, even of atypical issues. Autism is like that, and so are other things, and so we're all "comfortable" with that diagnosis. And we're going to try to be hopeful, even in the challenging times. "Even if I'm wrong, even if this is something else, he still needs the same therapies." Right. Exactly. The whole point is to help the rooster.

Her advice: Rally your team. That, and "Work your butts off right now." We need a plan for school, first and foremost, and she thinks the rooster will be best with an ABA shadow teacher. We will have to start by finding out if our school will allow that, and, if so, then find out who the district will give us, hopefully someone from the list of better organizations the doc provided. If our school says no, we need to find another school, and that moves to the head of the triage line. Next, we need all the OT we can get. The district will provide some, but we need to get back in to the Regional Center system for more, which means more evaluations, evaluations, evaluations, and more time. We also know we need language, both what the district offers and also someone with lots of expertise in unusual kids like our boy. We hear this "costs through the nose." Lower on the list: considering floor time, therapuetic riding lessons, play groups, and support for the mom who lives on the brink of losing it.

At least I can say rallying has begun. Troops are aligning. Thank you to those of you among the ranks. Today a wonderful friend and her husband came by -- they knew both kids woke us up a few times in the night and that we're fried -- and babysat for two of the fastest hours in recorded history. My guy and I just walked around a shopping area nearby in a bit of a daze and noshed and stopped in the used book store for reading material not about spectrum disorders. We got home to find the rooster sweetly playing ball and Peaches napping. On a good day, with the kids in two different rooms, primed for success, and the rooster getting undivided attention, my husband and I hope we look like overreacting parents with kids who seem like they are mostly doing okay. That would suit us just fine. My dear friend totally understands what we're going through, and she's seen our kids on good days and bad. I feel the relief of having left her with them on a good one, and I'm glad she and her kind husband didn't see them in action early yesterday morning.

So with our "comfortable" diagnosis I reach the place in my blogging (at post number 50, I believe?) where the totally unfiltered disclosure begins to become gradually less comfortable. I don't know how to process this shift yet, or really any of the shifts. I just know that, while I live as open book, always have, I'm a big girl and can choose that for myself. He's a little guy, and I need to start considering if he'd really appreciate my endless full disclosure.

The point of this whole process is about helping the rooster more than it is about helping me. Blogging often helps me TO help him. I will struggle to find the right balance, the one that feels most comfortable.


Anonymous said...

Good for you for rallying the team and getting things started for the Rooster.

Use blogging for what you need and what makes sense! I'm rooting for you! And the Rooster!

Anonymous said...

Oh yes, I'm sending you a big hug!! I love the plan, it makes perfect sense. And your develop. ped. sounds amazing.

If you need anything, don't hesitate to ask. And good luck. Keep us posted.

Niksmom said...

So glad you hubs got out for a short bit; that is so vital. And glad you have troops to rally now. :-)

As for the blogging, I don't know that it has to be either/'ll find your way to a balance one day, one post ata time. Getting what you need is as important in getting what Rooster needs. If you can't take care of yourself you won't be able to take good care of him (or the rest of the family) for the longer haul. Easier said than done, I know! But needs to be a priority, too.

Beware of going into "panic" mode in reacting and diving into too many things all at once. Leave time for just "being" as well...a family, a couple, the kids to be kids, you to be an independent spirit, etc.

Just my unsolicitied two cents. :-) xo

Jordan said...

Sounds like a terrific plan, I hope you can find people you are happy with who can help you quickly. And as others have said, use the blog in whatever way(s) you need. Sometimes a mom really needs an outlet!

Christine said...

I'm so glad the two of you got out for a little bit. And that you have that support from good friends. Don't put yourself too far down the list though. You are an important part of the system that needs to be functioning to support the Rooster.

redheadmomma said...

So glad that you guys are headed in the right direction. I know it's a boatload of work & effort, but you'll see some great progress, and you'll appreciate every little improvement. That's probably one of my favorite things about being in the world we're in.

I wanted to say also that I happened to be in therapy when Noah was diagnosed, which was a nice coincidence, because she really acted as a sounding board for me. It was really a godsend for me to understand just what that brought up in myself, and she gave me a light when I really waded through all the grief. You certainly don't need to do that, but it's imperative that you not lose yourself in this sometimes very difficult process. For instance, you could be on the lookout for a support group for asd parents, or see if there's a yahoo group in your area if you want online support (you've probably already done that). And you're already blogging which is a fantastic way to get support! :) In my instance, I really wanted to find a good group of moms that I connected with because I felt so lonely in my world - none of my regular girlfriends truly understood. So after a while, after I started taking action on Noah's progress, I started trying to do that, a tiny bit at a time.

You'll do everything for the Rooster, that is clear - I think the hard part, as you find your groove on that, is balancing that effort with effort for you, your husband, and last but certainly not least, Peaches. :) Many blessings with you as you start this journey.