On Being “Enough”

After a fairly rough meltdown, it takes awhile for The Man and I to process, as well. We were discussing the events of the weekend, and then The Man asked if there was anything we could do about The Boy’s insistence to strangers and acquaintances that we have a purple dog at home named Barney.

I shook my head noncommittally, as I was still focused on the situation that had triggered the meltdown this weekend. I wasn’t even thinking of anything else, but apparently The Man had some other things on his mind, as well.

I got quiet, and he asked if he had said something wrong or upset me. I started to cry because I was upset. Not with him, but because I didn’t really know the answer to his question, and I was overwhelmed with the feeling that I am not enough.

We used to have quite the “village” to help me navigate raising a boy on the spectrum. Now, I feel like I’m it, I’m the authority. I have stopped believing that anyone in the school system knows any more than I do about autism. And there’s a very obvious limit to what I know.

I don’t know if the fantasizing about pets and cars he has “owned” and all of that can be curbed (or should be curbed). I don’t know if it needs addressing or if it will go away with time.  I just don’t know.

It’s easy to get overwhelmed with worry, and I guess I’m particularly susceptible to worry after a big meltdown. And I suppose that’s ok. But it’s not a nice feeling, and I hope it passes quickly.

Time to Know the Why

Your challenges change over time. The same is true when raising a child on the spectrum. Yes, I no longer need to worry about The Boy bolting into a street or into the crowd at a mall. I no longer have to worry about acquiring words and peeling meat sticks so he will eat some protein.

363px-Decorative_toilet_seatI do have to worry about the increase in anxiety. I have to worry about how seriously I need to take the screams of “I hate my life!” and “Today is my last day!” I do have to worry about just how to handle a meltdown when my son is bigger than me, in a public venue, and out of control.

Saturday, the recording of toilets in public spaces issue reared its ugly head again. I should have known it was coming. His dad cancelled on him for Thanksgiving, and hasn’t called in several months. And the talk of toilet models and interest has increased exponentially. I should have known, but I didn’t. And I had to put my foot down and remind him that we don’t record toilets in public bathrooms. Suffice it to say, it didn’t go down well. Heh.

After he had calmed a bit on the way home (a two hour trip to our favorite town which was supposed to include a stop for me at a stationary store so I could give The Man some ideas for Christmas, but was cut short), part of The Boy’s plan was to show me how I was mistaken by showing me videos that others had taken in public restrooms. Ahem. Yes, he is indeed a teenager.

He calmed, but didn’t let it go as easily as he has in the past. He’s of an age where he is questioning authority. But autism mixes it all up because parts of him are teenager, and parts of him are 10 year old boy, and parts of him are too smart for his own good.

When we got home, I let him settle, and then we talked. We talked about how Mom and The Man make the rules, and it isn’t a democracy, although I will always listen to him. We talked about why some people might not understand his recording in a public bathroom, how they might misunderstand and be afraid. How they might call the police, and how the police might not understand. We talked about how The Man and I don’t want him to be in that situation. We talked about some of the things he had said to me when he was angry were not nice, and that everyone says things they don’t mean when they are angry, but that apologies are necessary afterward.

He still has a burning need to record toilets as they flush. I can’t erase that. But if he’s of an age where he can try to prove me wrong in some of my judgments, he’s old enough to listen to why I make the decisions I do.

(We also talked about how next time we go somewhere, we make mom’s stop first.)

Mom’s Voice

Got a text this morning from The Boy’s TA: “He’s having a rough morning and wondered if he could call you. Are you available?” I said sure and within a few minutes, was talking to him on the phone.

It was a weird night and morning. We had flash flooding last night so I had to leave my car at Grammy’s which meant The Man had to drive me back this morning to retrieve my car. And then he had to drive The Boy to school which had a two-hour delay. Obviously enough to trigger a rough morning, although he seemed in good spirits before school.

“I should’ve just gone to Grammy’s with you this morning. I’m not feeling too good.”

“Not feeling good, like with your emotions or your body?”

“My body.”

“Well you kind of have a shorter day today, and I do too. So try to stick it out and I will meet you at Grammy’s after school, ok?”


His TA said he was much more responsive after the phone call and had started getting his things together to go to class. For some reason he seems to just need to hear my voice sometimes to reassure those anxieties that are keeping him from doing what needs to be done. We have meds now, that are as-needed (we haven’t needed them yet) for this type of thing. But I’m happy that talking to me seems to do the trick for now. Sometimes I just need to talk to my mom too.

Up, Up, and Away

This past weekend, we went to a fundraiser for a local Eagle Scout project. He is the brother of a young man on the spectrum, and his project was to raise enough money to construct and supply a sensory room for his brother’s school. His dad is also a pilot, so they were offering $25 rides in an airplane, plus there would be food and t-shirts, a bounce house, and other people to hang out with. I wasn’t sure we could swing the cost of the ride, but we went to support the project. Once we got there, everyone was asking The Boy if he was going to go up, and at that point, we really couldn’t refuse. So we went up, and it was grand. I’m so glad we did.

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No News Isn’t Necessarily Good News

Communication from the school regarding The Boy has dwindled down to virtually nothing.  And I learned the hard way when The Boy was first in preschool that assuming that no news is good news is never a good idea.

He started preschool at his home school in January after being kicked out of his speech-based preschool run by the hospital. In March, his dad and I went to teacher conferences and asked about kindergarten. The teacher laughed and said, “Oh he won’t be ready for kindergarten next year! We’re going to recommend he do another year of preschool.” She waited 3 months to tell us she didn’t think he’d be ready. We went home and started looking for a house in a district with better schools and a better reputation for kids with autism.

Question Mark Graffiti by Bilal KamoonAnd now, everyone from his school has gone dark… Maybe I’m gaining a reputation for being “that mom” and they don’t want to poke the bear. I don’t know. I do know that the district is depending on a TA with three other children on her load to act as my son’s primary special education teacher. The teacher who teaches his special education math and language arts classes was out for a week last week, but tends to freak out about things that aren’t very freak-out worthy. I’m supposed to get an IEP progress report with his report card, and haven’t yet received one although I’ve had the report card for over a week.  His classroom teachers don’t often communicate directly with home, and expect parents to “look online” for assignments, tests, grades, everything. That makes their job easier, and mine infinitely harder (which assignments have been modified, are the due dates and number of questions the same for my kid, or not?). Two of his teachers have started a texting thing, where they will send out mass texts about upcoming quizzes and tests – great! Except the last text I got was on a Sunday, saying there was a test the next day… I was signing his agenda every night, and that is also supposed to be where assignments are written, but it’s pretty blank now, so I haven’t been checking or signing it.

They’ve taken him out of a social skills class (that’s in his IEP), and put him with his TA for an hour at the end of the day. They still call it “Social Skills” but the teacher is listed as his TA (is that even legal? I asked the principal in my last email and she didn’t respond to that question), and from what I can tell there are no other kids in it. They work on getting homework done. I don’t know if the class he left remains, or if they reassigned that teacher. She also used to teach him math, but they took him out of her class for that, as well (and she was a good one).

I’d love to sit down with The Boy’s TA over coffee and just have a heart to heart with her. Let her know that I believe she is the only thing keeping my kid afloat over there. Let her know that it’s not fair for the district to use her like they are. And let her know that she doesn’t have to try to solve everything herself. I think she’s trying to keep me from worrying.

But the lack of communication is making me nervous. Time to investigate, I guess.


Participation trophies.

Let me tell you that I’m on the fence here, but I’m leaning.

Kids should not get something for nothing.

I do not think you need to have a graduation ceremony from preschool.  Nor do I think you need one from kindergarten, 5th grade, or 8th grade.  There should be one graduation ceremony, honoring your hard work, which was a long-term goal.  The rest of that nonsense does not need to happen.  A celebration?  Sure! Graduation? No.

Nor do I think 8th graders should be taking limos and renting tuxes for their 8th grade dance.  That’s a prom thing, and some traditions should be kept to the original event.

But participation awards?

That’s a little different.

This country has an obsession with sports.  If you look at the highest paid people in any society, you will see what they value in their culture.  Look at how competitive kids sports are.  Look at how young they enter AAU leagues, and spend their entire summers (and sometimes school years) traveling, training, and competing.  Look at how many news stories you see about parents who don’t know how to support their children, and cannot control themselves at games.

Every field day, my kid comes home with a participation ribbon.  He doesn’t win stuff in sports.  I didn’t either.  Just about every kid in my elementary school was on a soccer team.  I wasn’t.  I had absolutely no interest.  I played parks and rec basketball and softball a bit.  I was on middle school and freshman volleyball, and I played co-rec in college.  But it wasn’t my bag.

And it gets old seeing other people get stuff all the time.  It’s like watching the popular kid be popular all the time, or the really pretty girl be the center of attention all the time.  It just gets old.

And maybe the participation is kind of a socialist thing, spreading the good feelings around to everyone, regardless of athletic ability.  But before you jump on the socialist part of that statement, think about the other part.  The part about spreading good feelings around to all the kids.  Isn’t that something we want?

I don’t think participation ribbons make any kid think they deserve stuff for not earning it.  A participation ribbon never made me think I had really won anything.  But it told me that at least I showed up and tried at this thing I wasn’t really into.  And in truth, there’s a lot of value in that.  Lots of people grow up and have jobs that they’re not really into, and they aren’t the very best in their field, but they still get paid because they show up and try.

The Boy has taught me a lot.  Every kid is different, and too much in our society tries to peg them into the same interests and hierarchies.  It’s time we really look at kids as people in their own right.  Just because they didn’t win the tournament doesn’t mean they didn’t learn anything from it.  In fact, they probably learned much more from losing.

So if a participation ribbon commemorates showing up, trying, and learning, isn’t that what life’s really all about?

Participation ribbons for everyone. Everyone.


His Hopes & Dreams

His DreamsThe other day, The Man, The Boy and I were riding around as we are wont to do on the weekends, and we happened upon the local agency that employs young adults with intellectual and developmental disabilities once they’ve aged out of public school. The Man and I explained to The Boy what the young people with autism and other issues did inside the building. “They put together candy bouquets, do laundry, all sorts of stuff, and that’s their job,” I explained. “Isn’t that cool?” I asked.

A pause from the back seat, and then, “Can you be a band director there? Because that’s what I think I’d like to do.”

My heart just about broke while I was trying to find an answer. The Man responded that to be a band director you had to go to college, and in order to go to college you had to listen to your teachers and do all of your homework because that would be a lot of hard work. “I do all of my homework and listen to my teachers,” The Boy replied. “Ok,” we said and the subject naturally wandered in other directions as we drove on.

Could The Boy go to college, earn a degree, teach his own classes someday? Quite possibly. Don’t for a second think that I doubt my sons abilities.

What I doubt are the supports he would need to get there and our ability to afford those supports that are not in place. Realistically, colleges are not yet equipped for our kiddos (Hell, his middle school is not yet equipped…). And neither is the real world.

So how do I go about tempering my boy’s dreams, when it is the very last thing I want to do?

Demands, Airplanes, and Christmas

Text from the ex (summarized by me): Hey, you haven’t told me if I can get The Boy for a week after Christmas, and oh by the way, I can’t do Thanksgiving. And I want him to fly up because I can’t get off my sorry ass and drive.

I can’t tell you the last time the ex has spoken to his son on the phone. He hasn’t seen him since last Christmas.  He’s made one piddly child support payment in the last 60 days, but he is going to text me and all in one breath tell me he’s cancelling his next visitation but wants to put him on an airplane after Christmas and could I hurry up about getting back to him because he has to buy plane tickets.

How about you hurry up and pay child support?  How about you hurry up and call your son?  How about you —

Deep breath.

Only four more years. Putting him on a plane will never happen because it would take money and planning skills, neither of which he obviously has.


Update: Since this was written, I texted him to ask what he had found out about airline assistance programs. He promised to call Sunday to talk about it. Never called.

stress by bottled_void

Halloweekend from Hell

Halloween was never my favorite holiday as a kid, but my kid loves it, so it’s been much more fun over the past fourteen years. We are getting to the point where the trick or treating should probably be winding down, but hasn’t, and I don’t quite have the heart to force the issue.

This weekend, the issue is compounded because of too many opportunities.

Tonight, the high school band is hosting a party to which the 8th grade band members have been invited. I thought maybe this is the one thing we could skip this weekend, but The Boy has other ideas.

HalloweekendSaturday evening, we plan to take him trick or treating in another neighborhood.  He definitely won’t give this up.

Sunday evening, his best buddy who is now at the high school is hosting his annual haunted house, and he looks forward to this all year.

Three days in a row and the weekend is shot.  I was aiming for compromise and maybe doing to out of three, but I lost the fight, and since Halloween is for the kids, that’s ok. Plus he is actually choosing to do social stuff, and how can I say no to that?

But Mom definitely gets a weekend off next weekend!

Yet Another Schedule Change

schedulesIt seems that several times a year since The Boy has been in middle school, there has been a sudden inexplicable schedule change. Sometimes it’s the same teacher, same class, but he has been moved to a different hour.  Sometimes, the teacher changes, and sometimes, everything changes at once.

I’m not sure why the school thinks this is appropriate, especially for students who are in the special education program, and whose anxiety is triggered by any small amount of change, let alone massive schedule changes. And the changes in this instance affect only special education students in seventh and eighth grade – the very populations for whom you should be striving for continuity!

The principal was explaining to me when we met that there were few on staff who could “get through” to The Boy, explaining that his TA was excellent, and was the only one who could do this consistently. It seems counter-intuitive then, to remove a teacher from his schedule entirely, one with whom he has built a relationship, when up until now she has taught him math and social skills.  How does a child form relationships with adults when he doesn’t know how long he will see them on a regular basis?

It may seem small in the whole scheme of things, but moves like this make me question if the decision makers know anything at all about students with special needs, and especially those with autism.