Anxiety about the Unkown

Posted on April 13, 2016 by simpleijustdo

When I was about 10, my parents and I watched “Iceman,” a movie about a neanderthal man found in ice and resuscitated. The question I had for my mom at the end was if it was ever possible for us to return to that state of being – unfamiliar with the technology of the day, and possessing only the most meager of skills. She answered that it was possible in the event of a nuclear war (this was in the mid-80s). Unbeknownst to her, I began to panic about the possibility of nuclear war, and the media coverage of the cold war only fed my frenzy to the point that I was afraid when I heard planes flying overhead, thinking it was the Russians about to drop the bomb.

My dad finally talked me off that ledge (he really would have been a fantastic teacher or counselor) one night, explaining to me that my fears were not founded in logic, and that I was safe.

I went about my life, and I was fine.

But every once in awhile, I get gripped by a current worry, and it turns into an irrational fixation. The internet is a wonderful tool and the most fantastic invention of our time, but during these moments, it is my worst enemy. Rather than trusting my own intuition, experience, and intelligence, I go searching for an answer from strangers who don’t know me or my situation. The answer must be out there, I tell myself.

how I worry And so, with my child’s future seemingly in the balance, and a boy who looked at me with panic in his eyes last night, asking “Do I have to quit band?” this is where I am today. In front of the computer, searching for answers, for someone to tell me the right thing to do. Do I choose one of the pre-existing paths for The Boy to follow through high school, possibly denying him access to college or, on the other hand, subjecting him to years of struggle and stress in general ed classes with little support? Do I try to blaze a new trail and fight for a hybrid that is legally his right (with little hope of succeeding)? Do I fight for him to be in marching band when I’m not sure whether his love for it is more obsession or genuine interest? Do I just pull him out and homeschool (somehow)?

For my sake, I’m putting it out of my mind for a bit, waiting to hear when the meeting with the director of special ed will occur, and asking for the IEP to be postponed at least a week. Coping through distraction and delay.

No Info

Posted on March 30, 2016 by simpleijustdo

One of the biggest struggles I have as a parent to an autistic child is that others are not as prepared as I am. If there’s one thing I’ve learned in the nine years since The Boy was diagnosed, it is that you need to do the groundwork in advance, or the likelihood of a meltdown or other avoidable issue increases. For example, when you know dad will probably cancel Spring Break, have a plan B to distract The Boy from his disappointment. Learn which restaurants only serve soda pop, so you can either avoid them or bring your own juice boxes. Half days before break are going to be hell, so find out who will be absent, prepare The Boy as much as you can, and hunker down.

hands-coffee-smartphone-technology Last night, I got a text from The Boy’s band director. “Wear your band shirts tomorrow for pictures.” Um… The Boy wore his band shirt yesterday. If I had known, say last week, I could have prepared a bit better. No meltdown this time, because I just made him take it off as soon as I got the text to avoid spillage, but he’s basically wearing the same thing to school two days in row. *sigh*

It’s almost April, and I’m remembering why we used to have The Boy’s physical scheduled for February… camp applications. Except the local Autism Society chapter has great and exciting news (that they’re having a hard time getting the word out about) – they will be hosting an overnight camp and a day camp this summer! Great! How about some information to go along with that, like dates, and say… physical requirements? Because if it gets to June, and there are no more spaces, or we didn’t get a physical in time, I’ll have a melted kid on the sidewalk…

I know I can’t rightly expect the rest of the world to conform to our needs, but whatever happened to a little advance notice? I don’t think I’m asking too much, and I know people get busy, but seriously? IEP questionnaires that get sent home two days before they’re due, no information yet for chaperones for a trip to Washington DC in May, no word yet on when our spring IEP might be…

The Boy is not alone in his anxiety

Keys to Independence: A Challenge

Posted on March 24, 2016 by simpleijustdo

Recently, Grammy & Poppy left town for a few days, and rather than disrupt The Boy’s routine, we planned for him to still go to their home after school to hang out until The Man or I could come to pick him up. In preparation for this, I had a spare key made, thinking I would give it to The Boy, show him how to work the lock, and let him practice for a few days. Except that the key I had made didn’t work, and when I attempted to show him, he got frustrated lightning-quick, and didn’t want to try anymore.

We resolved that situation another way, but it has me thinking about all of the things a 14 year old on the spectrum should be practicing for the day when he has a bit more independence. You see, we are both tired after our long days of work, and I don’t push too much at home, especially during the week. Weekends, I ask a little more, and now and then there are certain chores he helps me do. But I know we could do so much more, and work on that lightning-quick frustration level, too.

Planner nerds and Bullet Journal Junkies often have monthly challenges, and the idea is to take something you’d like to practice, like doodling or hand lettering, and do it each day with a guided prompt. You commit to the challenge, you do the prompts, and you share with a special hashtag on social media (and lots of people miss days, or get “caught up” later if they get behind – no worries). I’ve been thinking about doing an Independence Skills Challenge for the month of April, which also happens to be Autism Awareness Month. There will be a list of “prompts,” or specific independence skills to encourage each day or couple of days. I will share more details next week, and I would love it if you would join us with your own kiddos (on the spectrum or not!), but I’m excited, even if The Boy and I are the only ones doing it.

Keys to Ind Chall

Sharing

Posted on March 23, 2016 by simpleijustdo

The Boy is a only child, and as such, doesn’t have much experience with sharing. It’s a common problem for a neurotypical kid, and for one that lacks theory of mind (the ability to understand that others may have different thoughts and emotions of their own), it is even tougher.

This past weekend, The Boy got up earlier than us one day (!) and headed to the living room. He turned on the On Demand feature on our cable and found the Sonic cartoon he was looking for, pressed play, and promptly began recording it within some app on his iPad that records in black and white. This is a new twist on an old interest – making things look like the pre-color era, and has even permeated his drawings, making Sonic look like Steamboat Willy. Pretty cool, actually.

The problem came a little later when we returned from a family outing, and he promptly sat on the couch and started u the On Demand feature again. The Man’s intention, of course, was to come home and watch a little golf (and therefore I was going to take a nap). Because the living room TV is a shared TV, and The Boy was told he had to work out a schedule with others that want to use it, a meltdown ensued.

Time to pull out the board games and practice turn-taking, too.

What can you do? He just doesn’t have much experience with this? If he really had social skills class (like he’s supposed to), I’m sure this is something they would practice. He used to practice turn-taking when he was a little one in speech therapy. All of this has me wondering, what social instruction is he getting, anyway?

A new friend reminded me of those days, hauling him to speech and occupational therapy even before we had a diagnosis. And the speech therapy fell to the wayside when the school began to provide it. He had an awesome speech pathologist in Elementary who focused primarily on pragmatics, but here, his time with any speech (or social skill) instruction has dwindled to almost nothing. Maybe I need to see what insurance will cover and get The Boy back into a social skills group outside of school again… There’s clearly some skills that need practicing.

Transition to High School: He Has No Idea

Posted on March 22, 2016 by simpleijustdo

Last week, I wrote about the “attempt” by the district to get some input from The Boy regarding his future for our upcoming IEP meeting during which we will discuss the transition to high school. The amount of effort put into getting his input was exactly one worksheet, borrowed from another school district. At that time, I was too busy shaking my head to know exactly what to do next.

I took that worksheet and put it into a digestible format (PowerPoint), and added some possible answers for The Boy to choose. I didn’t send anything in on the “due date” which was Friday. Over the weekend, I sat down briefly with The Boy and the roughly 15 slides with questions about his future. “Hm,” he’d say. “Go to the next one,” and “I haven’t really thought about that before,” were common responses. To summarize, I got nothin’. Monday, I sent in my responses to the parent survey (it is now Tuesday morning, and they are still in his backpack, by the way), and emailed his special ed teacher to explain that he didn’t have much response to the student survey, and it was either because he really doesn’t have any idea, or he’s not comfortable sharing his ideas at this time. Her response was that she had a simpler survey format she could send home. No doubt copied from the same school district… I replied that I didn’t think it was the format, as I had modified that for him, but the content was the issue, and that he really has no response.

What do they expect? Mom asks 15 questions or hands him the worksheet and they’re magically going to get profound and thoughtful answers to just what is going on inside my son’s brain? For the umpteenth time in the past three years, I have to ask, “Are you NEW here? Do you not know ANYTHING about autism?”

A serious, thoughtful, student-centered approach would be to integrate some of this transition planning throughout the 8th grade year, directly within the “social skills class” curriculum… You know, that curriculum that the principal wants to change willy-nilly based on what she feels like is important for my son? But what do I know?

I sometimes wish I didn’t know how half-assed they are approaching my kid’s education. Maybe ignorance would be bliss. But I do know, and I’m powerless to change the culture of the school and the district. That change has to come from within. I can scream and shout and threaten legal action all I want, but change is terrifyingly slow in education, and even those on the inside are mostly powerless to change it, as well.

My only course of action is to muddle through and shake my head.

Dead Computer

Posted on March 2, 2016 by simpleijustdo

Sunday, The Boy had a computer go down.

I can usually get things up and running, or at least figure out the problem. That day, the problem turned out to be a really old computer that just wasn’t going to turn on anymore.

He had found it high up on a shelf in my closet, and had been using it for awhile, primarily to watch videos. Why can’t he watch videos on the portable DVD player he has? You’re asking the wrong person. It was a Gateway computer (I don’t think they even make them anymore, do they?) that his dad and I had bought, possibly before he was even born. It wasn’t even capable of accessing wi-fi. Yep, OLD.

pexels-photo-51415 But to him, it was like watching a friend die, and that core piece of The Boy’s autism, attachment to things, reared its head again. He insisted he had damaged it by dropping it, which he hadn’t. He insisted that it couldn’t possibly be replaced. We kept focusing on the fact that he is getting a new computer – a delayed Christmas present to replace the brand new one that crapped out on us the day after Christmas. He didn’t want to hear any of it. His old friend, the Gateway, was toast, and his world was ending.

The Man turned to me at one point in the day-long drama with utter disbelief that he felt so strongly about a thing. “I don’t get it,” he said. I tried to explain about attachment to things, but it is difficult for us NTs to understand.

I do know when The Boy is hurting, though. We made the best of the day, tried to be gentle and talk him through it. By evening, he was making peace with himself and the reality that the computer was not going to turn on again. And the next day he was searching online for a new one.

It’s not going to go away, this attachment to things. Or maybe it will. I don’t know. It’s hard to predict and prepare for, though. So in the meantime, we just have to try to understand, get some perspective, and be gentle. Poor kiddo.

Presumption of Competence

Posted on February 3, 2016 by simpleijustdo

Hands down, the biggest lesson I have learned since moving my son to another school, another school district, another state has been that one should never presume competence with anyone who deals with your child.

Unfortunately, classroom teachers know very little about IEPs and special education law. It just isn’t required of them in teacher prep programming, and if it is, there’s very little of substance that is taught. Many times, when a teacher is in your child’s IEP meeting, they are following the lead of the special education teacher and the administrators. If they do any modifying of assignments, or make any accommodations for your child, it’s usually under the direction of a special education teacher (and many don’t do it at all, and leave this entirely to the special education teachers and even the TAs). This is not the case with all general education classroom teachers by any means, but if you presume competence about special education matters, you will most likely be unhappily surprised.

The same can be said of administrators. Those that know about special education law are in a shocking minority. I worked for and received a degree in school administration, and only a portion of our one law class covered special education law. Administrators rely heavily on their special education teachers to know the law, as well.

Why is this important? When you head into that IEP room, you are relying on the expertise of one person, your child’s special education teacher, to ensure that what is happening that day is legal, and that you’re child’s rights are being met. And if that person isn’t quite up to snuff? Then what?

It is imperative that you learn about what should be happening in that IEP meeting, in your child’s classrooms, in that whole district. Get your hands on anything from Wrightslaw and read it until you know it. Otherwise, your IEP meeting could be “run” by and administrator who wants to reduce your child’s social skills time, and have the TA take him out into the school to practice unlearned skills because that’s what she thinks should happen. (true story…)

With the proper knowledge behind you, you can respond, “But that’s not how this works. That’s not how any of this works.”

Helping Him Connect

Posted on February 2, 2016 by simpleijustdo

The Man and I were grocery shopping this weekend, and if you do like I do, and go on certain days of the week, you tend to notice the same people shopping on “your” days. I also tend to do the shopping alone, because I can get in and out of the store in twenty minutes without the boys, and it turns into an hour long negotiation with them. But this weekend, The Man tagged along, and we left The Boy at home enjoying his independence.

One of the people I have noticed on previous trips is one of The Boy’s friends-who-is-a-girl. She kinda, sorta recognizes me from band events and such, but I don’t often do more than smile big at her. I mentioned to The Boy that I saw her on one of these trips, and so now, when I leave him at home, he asks me to let him know if I saw her.

This weekend, I did one better. After I saw her, I Facetimed The Boy to let him know, and who walked down the aisle right as I was doing it? The girl in question! So I approached her and said, “Do you want to say hi?” and pointed the face of the phone toward her. A bit confused, I saw a big smile break out on her face when it clicked who I was, and who was on the screen. “He’s showing you his cat,” I said. “Awww! How cute! Hi!” she said to The Boy. His weekend was made, and even though I probably confused her for a minute, I helped him make another connection with a friend.

It may not have been the most “normal” occurrence for her on a weekend, but a mom’s gotta do what a mom’s gotta do to help her kiddo make connections and spread awareness and acceptance.

BuJo and ASD

Posted on January 14, 2016 by simpleijustdo

I mentioned recently that I have begun bullet journaling, and it has helped me put one foot in front of the other to get past some pretty dark, helpless feelings this fall. I also belong to a fantastic facebook group with over 14,000 members who also bullet journal, and it has connected me to people across the globe. One of those fabulous ladies is an autism mom in the UK who shared that her son was helping to set the table, and began by making a list of “supplies” he would need – five plates, five forks, etc. – on his iPad. Then, he gathered his materials and put them in the appropriate spots on the table (while shouting loudly what each was). She remarked to him about his list. “Why did you make a list?” He said, “You remember everything, Mom, and you make lists in your journal all day long.”

This story got me to thinking. The reason many of us bullet journal is because it can get overwhelming relying on our brains to remember everything. I, personally, am the type to need to get things on paper, because if I don’t, I will remind myself to do that one thing at least six times in one day – how exhausting, and how almost perseverative (is that a word? it is now…)… Overwhelmed… Perseverating… Indeed, one of the most relied upon strategies for coping with autism is the social story (a list of sorts to describe what will happen), and another is “first, then” (First we will do some homework, then we will have some m&m’s). Maybe, just maybe some kiddos, young adults, and adults on the spectrum would benefit from bullet journaling.

I may try this with The Boy. But my primary purpose with this post is to share an idea, a connection, a possibility. This may be a strategy that could help you or someone you know. Let me know your thoughts in the comments.

On Being “Enough”

Posted on November 25, 2015 by simpleijustdo

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.