Even before Adrian actually moved out, I warned my husband that when Adrian moved I’d need a few months. I knew it was going to be such a huge shift for me that I’d need time to figure out what this new life was going to look like.

This turned out to be true for my other children as well. Zee decided to give public school a try. A couple of months later we decided that attending public high school would be the best thing for Bee.

In less than a year’s time I went from being Adrian’s main care provider, a high school teacher and elementary school teacher to… well, homeschooling one high school student who works well independently.

Yah, I’m still shaking my head at that. It’s so easy to say and yet the reality of it is just too big for words. I don’t feel like I can explain all the changes, both what’s visible and what’s not.

Adrian’s been happily living at the residence for a year now. I spent these last few months alternating between guilt and self-reprieve. On the one hand, I clearly have fewer responsibilities than before. It feels like I should be taking on more. I feel the pressure to get a job and contribute financially… just because I can.

But then I also realize that what I was doing before wasn’t necessarily good or healthy for me or my family. I don’t want to jump into anything that’s going to leave me gasping for air like before.

And yes, though I hate to admit it, a small part of me feels like I’ve earned a bit of a break. For so many years folks told me they didn’t know how I did it. I look back now and I wonder how I managed it all. I really don’t know.

All the while I’m impatient to get to the new ‘normal’.

I suppose I’m slowly getting there. I’ve started routines to take care of myself. Exercise most mornings, getting enough sleep, getting my hair cut on a regular schedule, spending more time preparing healthy dinners, etc.

I’ve found time to do some programming, take a training class to help other parents at IEP meetings, do some household repairs, reorganize and just keep up with the housework better than I had before.

I’m enjoying the flexibility this new schedule gives me to still be an active advocate for Adrian, to drive out and see him often, to spend time with my other kids and my husband, to help my sister out by taking care of my nephew from time to time, etc.

For quite a while now I’ve been contemplating this blog. Can I still write here even though everything is so different? I guess I’ve decided the answer is yes. Cause even though it doesn’t look anything like what it did before, it’s still my only job. ūüôā

Too Much To Tell

December 28, 2012

So many times over these past few months I’ve thought to come and write here… but the same thing stops me each time… Where to begin?!

A year ago I could not have even imagined all the changes that have taken place. My life now is totally different from when 2012 started. To a great extent I’m still trying to get a grip on it all.

Adrian moved into a residential school in April. He’s doing well there. It becomes more and more clear that it was the right choice for him … and for us. But it’s hard to even begin to describe all the ways this changes my life.

The girls started homeschooling 9th grade in August. We’ve made it to high school. I’m very pleased with the independent study work the girls are doing. They’ve learned and done so much even since August. I love that I can give them time to follow their passions. But a lot of the work 9th graders do is (and should be) independent. I give them a monthly schedule of work to complete and they do it at their own pace and in their own time… My ‘teacher’ schedule is lighter with them.

Then there’s Zee. Though we’d encouraged him to give public school a try back at the beginning of the school year, it took him till November to decide he really wanted to give it go. So he began attending public school at the start of December. But that means that, quite suddenly, I’m not teaching a 3rd grader every day.

So here I am. Gobs of time on my hands like I haven’t seen since before I started having kids 16 years ago. A completely different life from what I had just one year ago. All good and wonderful but just so….. different!

And now I’m trying to figure out where to go from here.

Covered In Nut Flour

August 16, 2011

I would love to write about the soft start to our new school year but I simply haven’t the time.¬† See, I’m spending all my days in the kitchen now cooking and baking to try Adrian on the specific carbohydrate diet (SCD).¬† Oh, and praying that it will have some impact on his behavior to save someone from being institutionalized.¬† Cause, yeah, if things continue on they way they have been either Adrian or I will land there.

It’s insane.¬†

I’m not a baker.¬† I suck at baking.¬† I hate baking.

But when you’re doing a diet that removes all sugar, grains, starches and¬†artificial stuff… you have to make 110% of the food by hand.¬† I’ve baked more in the last 3 days than in the last 3 years put together.¬† Mixing and measuring while¬†Adrian tries to turn my head and get my attention to ask to go for a drive for the 300,000th time today.¬† Cause, yeah, of course I’m gonna try this while he’s off of school, going stir crazy at home for 3 weeks straight.¬†

Did I mention this is insane?

And wouldn’t ya know, my kitchen sink is broken.¬† As in unusable.¬† Cause really, starting a difficult, work-intensive diet with a super-picky autistic, cabin-fever, giant man-child isn’t hard enough.¬† No, if you’re going to do something difficult then you should do it the hard way. Ya know… without running water.

Yeah, let’s do this the hard way.¬†

Did I mention that my husband is gone this week?  :O

Adrian’s been out of control for about 3 weeks now.¬† It’s been a rough.¬†We think hormones are partly to blame. It’s been severe enough that we made the appointment to speak with the doctor about options.¬† He’s very unhappy and his compulsive behaviors are preventing him from¬†enjoying the things he usually finds calming and relaxing.¬†

I was feeling awful weary from it all this afternoon when I picked Adrian up from school.¬† Then, through the¬†mirror,¬†I watched as Zee and Adrian played.¬† They shared a few cookies, they laughed and giggled.¬† They played games where only the two of them understood the rules.¬† Adrian’s communication device lay lifeless on the seat next to me, defeated by the blow Adrian gave it when he threw it through the air earlier today. Just¬†another in the long line of things he’s broken in the past few weeks.

But these two brothers didn’t need words.¬† They played and laughed and understood one another perfectly.¬† They put their foreheads together and giggled at one another. It was a sight to behold and brought tears to my eyes.¬†

See, despite the shattered window, broken baskets, cracked cabinets, the destroyed faucet and the¬†constant slamming of doors and drawers… despite all the difficulties of the past few weeks, I was reminded that it’s really not all bad.¬† Adrian is part of our family and we love him.¬† The essence of Adrian is still in there, even¬†when it’s hidden by¬†a storm of rage and sadness.

Hopefully we can find a way to help him through this rough spot.¬† But regardless what lies ahead, I won’t soon forget the image of brotherly love or the reminder about how lucky we are to have him.

I’m Back!

May 18, 2008

Ok, so I really never left.  But things have been absolutely insane around here lately.

First, I was helping my husband get the websites up for our company.¬† The prototype of our software is close to being ready and we’re anxious to get it out there to the non-verbal kids we hope it will help. The one site is our company site, www.AutisTech.com¬†¬†¬† The other is a community site where we hope to bring together resources and¬†infomation for parents of autistic children.¬† We’re hooking up with professionals we know to pick their brains about everything from IEPs to speech therapy.¬† Those articles should be out soon at www.EverydayAutism.com

Then there was the everyday stuff….

Monday my sister, for whom I advocate, came to discuss some things I’ll need to work on for her.¬† Then I had to go back to the doctor for a silly cyst on my back that’s been giving me grief for several weeks.¬† Ouch.¬† I closed the night out by hosting another Mom’s Night Out.¬†

Tuesday was a tag team doctor’s appointment for the boys.¬† Three shots total.¬†

Wednesday we picked my Mother-In-Law from the airport.¬† She’ll be staying with us indefinetly.¬†

Thursday¬†I was asked to¬†participate¬†in a presentation¬†at the NY Governor’s Expo on Assistive Technology.¬† It’s been a while since I’ve done public speaking of that magnitude so that consumed much of my time and energy the past few weeks.¬† My mother-in-law took care of the kids so my husband and I could go together.¬† It’s been many, many years since my husband and I have been out together, alone, in the light of day.¬†¬†The presentation when off without a hitch and we had a¬†great time.

I spent Friday doing approximately five hours of homework for a class on leading effective discussions. Yesterday I drove the 2+ hours to attend the class and drive the 2+ hours home.  The class was well done and I was glad I attended.

But now I’m tired.¬† I’ll spend today figuring out what¬†I’ll need to do¬†next week¬†and trying to get some much needed downtime.¬† Oh, and catching up on all that laundry that’s piled up while I was busy doing everything else ūüėõ

Getting Back To Normal

November 30, 2007

Normal for us, I should say. 

Things have steadily been improving at Adrian’s school.¬†¬†A draft behavior plan has been drawn up and implemented.¬† As a result, he’s much calmer and the aggressive behaviors have decreased significantly.¬† Relationships between Adrian and the team have improved and they seem to understand him much better now.

My job as Adrian’s advocate is never finished, but it seems that at least for the moment I can take a breath.


November 15, 2007

I have been consumed lately by the situation at Adrian’s school.¬† It’s consumed my time, my energy, my sleep, my thoughts, my conversations, ….

I knew that things were not ‘right’.¬† I saw Adrian begin to resist going to school.¬† I knew the classroom was experiencing a lot of ‘aggressive behaviors’.¬† So I tried to talk to the staff.¬† I went in for a 3 hour meeting.¬† I spoke to someone from the classroom everyday.

Still things were getting worse.¬† Then I found out they were regularly using the safe room.¬† It’s a padded room with nothing in it and the most common way to use it is to lock the kids in until they calm down.¬† I understand that with this population, it may be necessary at some point to use such a room to keep people safe.¬† My son is getting big and strong and it’s possible that in¬†a rage he could seriously hurt someone.¬†

The problem is that if things are going the way they should be at school, he shouldn’t ever be in a rage.¬† He’s been in this school for the last two years.¬† They used the saferoom a total of 9 times, after all other calming strategies were used and for¬†at least¬†the last 3 of those times (and I suspect many more)¬† Adrian himself sought a moment in the saferoom in order to escape a noisy classroom.¬† The teacher and I had agreed early on that a ‘lock-him-in’ strategy was not in his best interest, nor should it be necessary.

Two meetings later, I’m still not confident we’re on the same page.¬† Blogging is on the back burner till that happens. ūüė¶