IEP processed

Little Man’s annual IEP meeting was almost two weeks ago. It’s taken me a bit to process, mostly because I had other things going on…work, a trip to see my parents, Thanksgiving….I had to process it all anyways. I had to go back through the details, not in-the-moment.

Someone asked me about it, what happens, how did LM handle being in the meeting. I explained, “You spend the first five minutes hearing the ways your kid is amazing and how he’s improved. You spend the next hour discussing all his deficiencies, and making plans to help him.” Truth. That’s what goes on. You know what? I almost hate those first five minutes more than the rest of the meeting. Look, I know all the way he’s amazing. I have to make myself focus on those amazing qualities in the moments he’s completely falling apart, or pushing me over the edge, or having the mother of all meltdowns on the sideline of  his soccer game. He is amazing, brilliant, beautiful, witty, funny, empathetic, entertaining, cuddly, loving, and just….amazing. I’m his mom. I know this. I know they know his abilities, his strengths. It just always makes me feel like I’m holding my breath waiting for the “but…..”

So yes, he’s doing better with his collaborative work, although he still needs work. Yes, he’s very creative. Yes, he’s gotten better at communicating his needs. Yes, he has become a mentor to kids in younger grades working with the 3-D printer. His writing has improved. Can we please get to the hard stuff? The stuff we really need to talk about? The things we need to work out?

I knew he’d avoided going to class for some time when he was dealing with some bullying and then his perception of everyone around him – and their actions – went sideways. I didn’t realize he’d hardly been in class for nearly a month. His grades suffered accordingly – but WTH? Nearly a month not going to class? This is a small school with a small campus. There isn’t really anywhere for him to hide. I do know we dealt with the headaches and stomach-aches for over a week. I know he spent a good amount of time in the nurse’s office. But really, nearly a month hardly being in class, because he wouldn’t go. He ended up with two F’s, three C’s, and one A on his report card. My kids have NEVER gotten an F, much less two, on a progress report much less a report card.

The adaptive PE teacher on consult for him told us she’d have to hunt him down most days when it was time for PE. Again, WTH? They shouldn’t have to go look for my kid. He’s 13  years old.  He’s an 8th grader. The school is small, the campus is small, but you had to go look for him? Then he wouldn’t cooperate nor participate much of the time. So our PE goals remain intact. Get to PE, and participate to a percentage level.  He has a new sheet he has to fill out in which he earns points for showing up, participating in the activity, or running.

Most of his goals remain the same…..working cooperatively and successfully in groups, getting his work done, staying in the classroom, self-management, responding appropriately, stating verbally his feelings and needs, and showing up for and participating in PE.

I do feel like it is a team. We all want what’s best for him, and to best prepare him for high school and beyond. Then we had to start talking about the transition to high school. No, we haven’t decided where he’s going. We have narrowed it down to a few schools, one of which is very difficult to get into, one of which is lottery, and one of which is down the street.  The rep from the traditional school down the street was there towards the end. We had to talk about what potential issues he might face at that school.  PE is a big issue. I get massively twitchy when I think about it. I can’t picture him having to dress-out, in a locker room with a bunch of other, neurotypical 13 and 14 year old boys, can’t picture him participating, or possibly even showing up. I worry about him showing up for any class after the way this Fall has gone.  We won’t even discuss homework, or him staying in class, or him even looking like a typical student.  I just can’t.

I wasn’t entirely impressed with the HS rep. Her responses to some of our requests, and some of his particular issues, almost made it sound like she’d never had to manage or process a kid like mine. Didn’t give me much confidence. I know she won’t be directly involved in his day-to-day if he does go to that school.  We asked about preferential period selection for PE. She’d never heard of that before. We asked about supervision or a different changing location, or only changing his shirt rather than his entire outfit (he wears sweatpants most days anyways), and she responded as if no one had ever presented those options before.

Here’s the deal – he WILL get a full high school diploma. He’s capable. We will not settle for a certificate. That’s going to stand no matter where he goes to high school. Maybe that’s a lofty goal that is going to take a ton of work, a lot of meetings, and a billion emails and phone calls. Whatever it takes, it is going to happen.

So, back to the IEP meeting…..I left kind of numb. There was too much to think about, too much to process. There are many good things he’s done, many great ways he’s improved. There are many things he needs to work on. There are things to be concerned about. My stress over the high school selection, and how he does in high school is straight up through the roof.

One day at a time right? Be where we are, deal with where we are. What’s next will happen when it happens. How do I feel about this IEP meeting? Well, I’m good with the goals we set. I’m not sure how much success he will have achieving those goals within the next seven months, but that’s not really the point, right? The point is that they’re goals for him to work on, for us to help him work on, goals to help make him successful in school, in life. Good did come of it in that it led to good discussion, and Spouse was involved. We have had multiple discussions with Little Man.  He is mostly staying in class. We’re working on the rest. He’s a brilliant boy, with a brilliant mind. Someday, the world will be built for him, he will find his people, his corner of success in his way.

We have things to think about, more meetings down the road, particularly once we decide where he’s going to high school. For now, I’m going to take a deep breath, and be happy I don’t have to think about IEP’s for a little bit.

Almost forgot….How did Little Man do, participating in his own IEP for the first time? He didn’t want to go, and he did push back all the way up to the point of walking into the conference room. He didn’t say much, and we did have to tell him a few times to sit up, get his head off the table, but he was there. He didn’t yell, he didn’t complain, he didn’t growl.  He was there until we started talking with the high school rep and released him to go hang out with his friends at the lunch tables. He did it.

Let the Research Begin

Little Man is rumored to have done well on the high school tours field trip yesterday. I’ve had two good reports, and he was all smiles and conversation when I picked him up from school. So, yay for that. And now, the research begins.

He did like the Math & Science high school. He would like to put his name in the lottery for admission. I’ve reviewed their website and the paperwork they sent home. One thing caught my eye – Special Education support programs will be limited. I’m not exactly sure what that means. Do they not take IEP kids? How would my kid navigate their campus and curriculum if they don’t have the supports he needs? They have a few informational meeting dates coming up, so we’ll go to one of those and get some answers. While the school sounds fairly similar to where he is for middle school, I won’t give up the supports he needs. That one little line on the informational packet makes me say, “Hmmmmmm.” He also liked the school down the street that his siblings attend. He said they had the best presentation, and he got a flower from the agricultural department during their tour, which he was super happy about and proud of.

We do have a lot of options available in town. I just really haven’t wanted to think about this process. I’d love to stay in denial-land just a little bit longer. Unfortunately for me, the application periods are opening, and we don’t have forever. So let the research begin. Sigh…..

His Perception

I had an impromptu meeting with Little Man’s principal yesterday afternoon during after-school pickup. It was positive – I know they have LM’s best interests at heart. As the principal put it, they’re “all hands on deck” for him, particularly now, given what’s gone on the last few weeks.

Little Man hasn’t been going to class. Lord knows what he has been doing, but he hasn’t been in his classrooms. We’re working to fix that. The problem is he’s sure anytime anyone laughs when he’s nearby, they’re laughing at him, making fun of him. His teachers, SAI, and the principal are trying to catch it in the moment so they can help him see it is his perception, not reality.

Little Man has always had this thing….if one “bad” thing happens during the day, then the entire day is the worst day ever. If something bad happens during a certain activity, then he’s sure it’s going to happen every single time he does that activity. If someone laughs at him once, then every time that person laughs, he’s laughing at him. That’s his perception, skewed as it may be. Our job is to help him see that’s not the case. It’s tough work.

We have to help him overcome his fears and worries. We have to help him understand his perception isn’t always the way it really is. We have to move him past this hurdle. But this is part of his autism. his reality. He perseverates, gets beyond anxious, then does everything he can to avoid whatever situation he’s worried about. In the meantime, his grades fall and he loses friends. It sucks.

He has to be ready for high school….moving between classes, staying in class the entire period, managing social situations that are unavoidable. We have to help get him ready for that, so we’re all utilizing some tough love to get him past this current hurdle. We’re back in a phase of being on high alert nearly every minute of every day.

As for Halloween, he had probably his best yet. He went out with his friend across the street. I was not with him. Normally, he taps out after about the fifth house. This year, he was out for over an hour, and made it all the way around the loop. Then he sat in the kitchen with Big Man and a bunch of high school boys, interacting and talking. At one point, he did get a bit overwhelmed. He just looked at me and said, “I’m getting anxious…it’s too much.” I got him to a quiet space for a few minutes, but he recovered quickly and then was right back, re-engaging, laughing and talking. Huge wins, all night long, for him.

Duck!

I’m not talking about duck as in a bird. Nor am I telling you to duck. You know what autocorrect does to a certain word? Yeah, that.

I wrote about the kids laughing at Little Man last week.  He’s been reluctant to go back to science class since. I’ve seen the return of all his aversion techniques…going to the nurse’s office, leaving class to go to his quiet space, outbursts, tears, meltdowns. Friday, the nurse called about an hour after school started. He was in her office with a headache that wasn’t getting better. He had fallen and hit his head on the ground at soccer practice Wednesday night, and although he’d had no symptoms since then, she didn’t want to take any chances. I brought him home.  He was fine all weekend, outside of a meltdown Saturday  morning over getting woken up to get ready for his soccer game. It wasn’t pretty, and lasted about twenty minutes, but then he was perfectly fine at his game as well as the rest of the day.  He was great on Sunday – no meltdowns, no outbursts, no physical complaints.

An hour into the school day Monday, the nurse called me again. He was back in her office with another headache, and would I bring him some ibuprofen so we could try to get him through the day. So I took him some ibuprofen. Two hours later, I got another call. He was back again, the headache wasn’t any better, would I come pick him up. Back to school for the third time that day, and I brought him home early.  Yesterday, he made it the entire day (I’d told him that morning I wasn’t coming to get him early at all), but when  I picked him up, he told me he’d “freaked out” at recess, that kids were laughing at him, but he couldn’t tell me what the situation actually entailed, nor what had happened before or when the kids started laughing. He could not talk about it without getting really upset.

I emailed his team last night. Something is going on, and it’s affecting him intensely. His SAI let me know they’re aware something is happening and they’re looking into it.

Today, Little Man called me. I was in the middle of work, and asked him to ride it out for a bit, see if his headache got better. He called twenty minutes later. I took him ibuprofen again, and, as I had to leave town for work, told him he’d have to call Dad if anything else happened. Not to make it sound like I put work ahead of him…..I’d never do that if I believed in that moment he was dreadfully sick or really needed me, and only me, to come get him.

My phone rang while I was driving. It was the school counselor. Little Man had spent much of the day with her, most of that in tears. He’s unable to verbalize to her what’s happening when the kids are laughing at him. And he told her it would be better if he weren’t alive anymore. Dear Lord. My breath caught. I explained we do take him seriously, every time he says this. We can’t not take him seriously, but we also know he learned those words are a ticket out of whatever situation he doesn’t want to be in. It’s a very fine line to walk. I ducking HATE this. I hate it. I hate that he hurts. I hate he can’t tell us why. I hate we can’t just snap our fingers and make it better. I hate the anxiety, the social deficits that make him reach this point. Duck! DUCK! DUCK! DUCK!

I did ask if we could add speech therapy back to his repertoire. I feel he needs help with pragmatics again, as social situations and dynamics have shifted over the last two years. His peers are in an entirely different place, and they are very aware his issues, which are once again much more obvious. And we know how very mature thirteen year olds are. We’re also going to call his old outside therapist and see if he can have some sessions with her. The problem with that is he doesn’t want to talk when he’s supposed to talk. Does that make sense? If it’s on his terms, he *might* talk. If it’s a scheduled thing, he’s more likely to push back and shut down. DUCK!!!

I’m exhausted. I’m fearful for my boy. I’m emotionally tapped. I feel I have to be with him all the time, have to be on my guard all the time, have to utilize everything I have in me on him. Which then leaves the question, what do I have left for Spouse, for his siblings, for my friends, for my job? How is it fair to any of  us, much less Little Man. DUCK!

My heart just ducking hurts.

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.

Rollin

Holy wow – After that ridiculously long countdown to real summer, we have just two weeks before the Herd heads back to school. (insert bad words here) Where in the ever lovin where did summer go?

We’ve had an incredibly busy, super fun summer, but it has flown by. We’ve rolled from one thing right into the next, or at least I have. School finally ended for Little Man. The following Monday, he started tech camp. Big Man and the Princess were never really “off” as – I may have mentioned this before – high school sports continue to practice through summer. The last day of tech camp, we went to the showcase presentation, and then hit the road for Palm Springs. We spent four glorious days poolside, hanging out with our friends and neighbors who joined us, eating, drinking, sunbathing, reading, playing games, and golfing.  It was HOT, but we don’t care when we’re there. We’re in or right next to the pool all day long.

I was home for 1.5 days, then left for my summer scrapbooking retreat in  Big Bear. In four days there, I managed to finish my 2015 book, as well as our Spring Break Utah trip book. (pats self on back) It was much-needed momma time with friends. We walked by the lake each morning, talked, ate, laughed, and scrapbooked. The only bummer was our usual massage therapist wasn’t able to be there due to injury. I’d so been looking forward to that 90-minute massage. Sigh….other than that, it was a beautiful weekend.

After Big Bear, I spent three days running around like a crazed person, getting the house ready for a cousin invasion. Nine of them began arriving on Wednesday. They trickled in until Saturday, when we had everyone here. Did I mention that was also recital weekend? Yeah, that. We had five fun-filled, busy days. Oh, I won’t lie – we did take plenty of time to sit in or next to our pool, but we were definitely on the go for much of the time.

The day after cousins left, my bestie and her four teens arrived for a week-long visit. We didn’t really stop from the minute they arrived, but oh my…..so much fun! We forget how awesome our city is until people are here and we’re taking them all over. We hit Mission Beach, they kayaked La Jolla Cove, we went to the movies, spent a day in Coronado (on the beach and at the beach bar at the Hotel Del where there was a Norman Reedus (aka Daryl from Walking Dead) sighting (it was ComiCon weekend in San Diego and a bunch of stars were staying at the Hotel), watched the ponies race in Del Mar, golfed our club (K and I rode along while our spouses golfed), went wine tasting in Ramona (you get premium service when your FIL is the President of the Ramona Valley Vintner Association), and took in a Padres game. Yes, all of that. The day they left, I had a work event. I got home that evening and absolutely crashed.

This is the longest break we’ve had all summer……and I leave tomorrow for five days in Chicago. More fun…..a day a Lollapalooza, some beach time if the weather permits, and a Cubs game, not to mention more time (sans children this visit) with the bestie! Then I’ll be home for two days before we leave for a long weekend at my parents’ in Phoenix. We’re home from that trip for two days and the kids go back to school.

Are you tired? Cuz I’m tired. We’ve blasted through this summer, rollin from one fun thing to the next. I think I need a summer to recover from this summer. We’ve had pool time, bbq’s, baseball games, beach days, and movies. We’ve spent time with family and friends. We’ve soaked it all in, taking full advantage of every minute. I can’t believe it’s ending in two weeks, and we’ll be in for another long haul of a school year. I’ll put the pool towels and basket of sunscreen away, tuck the beach chairs onto their hooks in the garage, stow the cornhole game in its case, and say goodbye to summer 2017.

He’s Back

I”ve mentioned an uptick in Little Man’s anxiety as the end of the school year approaches. Much as we know it’s coming, the expected change in routine, the difference between scheduled and unscheduled, and even the differences at school as all the end-of-year activities come up throw him off. His anxiety shows in different ways – he’s harder on himself, he cries more easily, his outbursts are more frequent. He’s much better than he used to be, but the anxiety is part of him, part of who he is, and all his triggers are in play this time of year.

It’s been months since he’s come into our room during the night and snuck into our bed. He’s been sleeping better for a long time, and I contribute that to a growth spurt and hormone change. He’s also been in a much better, more relaxed and confident place this year. Whatever the causes, better sleep for him is better sleep for everyone.

He’s been in our bed, or tried to get in our bed, four nights in the last week. I woke at 3:30 this morning to a clicking sound. I initially thought it was Spouse getting a drink of water. Then I realized it was the familiar sound of teeth grinding and jaw-clicking. Spouse does not grind his teeth, and in my middle-of-the-night stupor, it took me a minute to figure out it was Little Man in our bed, grinding his teeth away. Sigh…in my bed, and grinding his teeth – a sure sign his anxiety is at a high level.

He has 10 more school days. We will have the inevitable fallout of him adjusting to the summer routine/non-routine, so I figure I have about a month of him crawling into my bed most nights. I’d just gotten used to him staying in his own room and sleeping soundly all night. That anxiety-fueled, teeth-grinding, flop-around-on-the-bed insomniac is back. Dang it all anyways.