What made us ask?

The Princess asked awhile back what made us start having Little Man evaluated for autism. It’s all so ingrained in my mind….the horrific summer we had between his first and second grade years….the micro-managing, the meltdowns, the worry that maybe I just wasn’t being a good parent to him/not hard enough. I remember being SO offended when my sister, who is a para, suggested we have him evaluated.

That summer was so miserable. I was exhausted trying to keep him from falling apart and/or lashing out every  minute of every day. We knew to do countdowns before we left for anywhere or changed activities. We knew he didn’t like unexpected loud noises. We knew certain things kept him comforted. But I lived from minute-to-minute, never knowing what disaster would come next. By the time school started, we knew we were dealing with ADHD at the very least. I was in denial about anything else. At his parent/teacher conference six weeks into the school year, I asked his teacher what she thought. She legally couldn’t really say anything, but when I said we were considering having him evaluated, she just nodded her head and said she thought that was a good plan of action. We’d known her for a few years already – I was comfortable enough with her to be honest about my fears and concerns. She’d had enough time to get to know him in the classroom setting. We all knew something wasn’t quite the same as other kids for my Little.

When my sister made the suggestion, I immediately texted my BFF – who happens to have a daughter on the spectrum. She’d spent some time with Little Man over the years of our friendship, and knew the summer we’d experienced. She said to me, “You know, she might be right.” I had an A-Ha moment of epic proportions. Appointment with the pediatrician scheduled the next day, which earned us ADHD eval paperwork and a referral to a child psych specializing in ASD. Within a month,  we knew he was ADHD, hyper type, and autistic.

I cried the day we got his official diagnosis. In so many ways, it felt like a life-sentence. I didn’t know what to do, how we would manage, what life would look like now. Then another friend with a son on the spectrum reminded me that Little Man was still Little Man. A diagnosis hadn’t changed him from one day to the next. That diagnosis would just get him the help he needed, and it helped describe him, but it did not define him, nor us as a family. It is part of who he is, who we are, but it is not all.

There have been some pretty dark days since Diagnosis Day six years ago. Some of those days have left us scarred. And autism does not go away, ever. What started us down that road? Well, it was just a realization that he wasn’t just an immature youngest child who was behaviorally challenging to us…..a realization there was something more, something deeper, and that we all needed help.  It was the complete understanding there was something different about him, that we weren’t just horrible parents and he wasn’t just a horrible, misbehaving child. That “more” was the impetus. And so, here we are, six years later…..he’s still autistic, but he’s still my Little Man. Nothing about that has changed.

Transitions

Little Man has one more year in middle school, but we are already thinking ahead to high school. The biggest decision will be where he goes.  I’ve been trying to live in the land of denial with this one. I’d rather not consider a) three kids in high school; b) his actual transition to high school (because we know how well the transition to middle school went); c) my baby in high school; d) getting to know a whole new IEP team; and e) his last tri-ennual evaluation, set for his Freshman year. All. Of. That.

He will, of course, have a voice in the decision-making process. What brought it all to mind today is that he brought it up in the car this morning. He and his buddies were talking about high school, where they each wanted to go, and – of all things – the possibility of getting community service hours by volunteering at their old elementary school when they’re in high school. Nothing like planning ahead! Anyways, he firmly stated he wants to go to the same school as his siblings. Okay, well, wow.

There is a math and science high school in town, which is much like the middle school he attends. It’s project-based, heavily utilizes technology, collaborative work, and it’s much smaller than the nearby high school. It’s a lottery process to get into the math and science high school, so it would be luck of the draw to get him in. It’s also across town – at least 20 minutes each way with traffic. So while I think it would be a really good environment for him, I’m unsure he will get in, and unsure of the logistics.

I like the idea of him at school with his brother and sister. I haven’t had all three in the same place in nearly five years. And if he does go there, that will give us that many more years of blessing those hallowed halls with our particular brand of crazy. I’m sure the Principal, VP’s, counselor, and school nurse are already cringing at the thought of three extra years with us around.

Knowing he would have his brother and sister on campus to look out for him and help him gives me small peace. I know how frequently Big Man and P see each other at school (hardly ever) during the day. It’s a big school with 2500 students, give or take. I do panic though…..the more students, the more opportunity for some jerk to give him a hard time. And don’t get me started on the PE situation with locker rooms, etc. I can’t even…..

He’s in a good place now. High school will be a new story. He’s hardly had to change classrooms, is used to not having homework, and has plenty of kids similar to him at his school. The kids know him, accept him, know his quirks and how he is. I can’t entirely picture how that’s going to go in high school. We do have other options besides these two. There is a charter high school, Classical, and other semi-homeschool options (although the thought of him being home more during the school day, well, that’s a whole other discussion). He seems bent on going to school where his brother and sister go.

It’s going to be a transition no matter where he goes. Those transitions are never easy with him. Yes, we have another year where we are, but the process has begun.

IEP, Psych, and social worker….Oh my!

When E was diagnosed on the spectrum last year, I submitted  a request to school for an IEP evaluation.  We were starting on medication and private therapy, but I knew we needed to get accommodations in place, as well as put in writing  the accommodations he was already getting in the classroom.  The meeting was a disaster. I walked out nearly in tears, frustrated and angry.  We did have some “wins” in that he would get a social skills group, and we were supposed to be referred to the 504 group for follow-up.  I realize we were not prepared then. We were still adjusting to our new world. Acceptance of his diagnosis would take time.

E has made so much progress in a year with the private therapy, and lots of work on his and our parts.  He has started off the school year with a bang.  He does have the same teacher as last year (love this woman to pieces), in the same classroom, with nine of the same classmates.  He knows his teacher well, knows her expectations, knows her routine, is familiar and comfortable in this classroom.  Those are the things that help keep E in a good, calm place.  This won’t happen again, and he is already showing some anxiety about which teacher he will have next year. With all these things in mind, knowing he still needs help, knowing we still need to get his current accommodations in writing, and knowing the chasm between him and his peers emotionally and socially is only going to grow and become more apparent, I resubmitted a request for IEP evaluation. And then I felt like I was going to throw up.

I feel a battle ahead. Maybe it won’t come to that, but I just feel it in my bones.  We have always had amazing teachers and they always put their students’ best interests first.  That’s not the fight.  I know his teacher has gone above and beyond to help Ethan be successful. He needs more. I know that. He has needs we haven’t even identified yet.  I will not let the “team” change my mind this time.  I am so nervous. And I’m terrified I’m going to break down in this meeting.

The school psych called last week – two days after I turned in the request – to let me know she had received it and when we could likely expect the initial meeting.  The social worker intern called today to get some background. He met with E today to start assessing his social skills and emotional management needs. I feel like things are moving much more quickly than last year.  We didn’t get any phone calls last year. We just received the notification of the meeting last year and then had the meeting.  I’m praying this is a good sign.  I’m praying the new principal has brought a new perspective to this whole process.  (good grief – this is coming out as scattered as I feel)

My emotions have been all over the place.  My brain is spinning.  I have all these things I want to say to the team about Ethan. I’m preparing arguments, making notes.  I will go in prepared. I will be ready to do battle if it comes to that.  I owe that much to E. He deserves all the help we can get him.  He deserves the chance to be successful, academically AND socially and emotionally.

Speaking of success….the issue brought up last year is that he is academically successful. Why yes, he is. He’s incredibly smart.  That is completely in line  with his diagnosis. I’m thrilled he’s smart, but I hate the words “academically successful”  when thinking about IEP’s.  There is more to a child than the  grades he receives.  He’s not really a disruption in the classroom, but that’s not all there is to whether a student needs help either. Sigh……see, preparing mental arguments.

I know this process is going to be long.  I know I’m going to be emotional.  I know it has the potential to be very draining.  I wish with all my heart we didn’t even have to think about this.  How I wish there were no diagnosis for him….that we weren’t in the world of autism spectrum disorders.  But here we are. I am so thankful for the support system we have. I am so thankful for friends who have helped so much and provided resources, friends who are always there to listen and offer a shoulder. We’ll get there, whatever it takes. We have to.