Tag Archives: Anxiety

Heads Up

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Grammy took The Boy to a doctor’s appointment today. She does that for me in the summer so I don’t have to take time off work. And I don’t really need to be there unless I know something big (like shots) are happening. If all we’re doing is weighing and measuring and asking if everything is going well, Grammy can handle that.

Except when they don’t tell you in advance that shots are necessary.

doctor-medical-medicine-health-42273Three shots, to be precise. When Grammy texted me, I thought, “Maybe he can be coaxed into it, but my guess will be no.” I was right. She took him to lunch, and I called to reschedule.

It’s the preventable stuff that just kills me. Because it doesn’t have to be this way. I get that your office is busy. I know medical receptionists have a lot to do. But is it possible, just maybe, that with your patients on the spectrum, you could give them a heads up, so we don’t have to waste all this time and unnecessary anxiety?

I know what I ask seems outrageous, but in this day and age of “patient portals” (ours currently doesn’t work), and texts to remind us of appointments, maybe it’s an overlooked possibility. I’m just sayin’…

Inclusion Starts with “Hello!”

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Thursday night, The Boy and I ventured to one of the marching band rehearsals from which he has been excused, due to logistics and conflicts with summer day camp. We wanted to just stop in and possibly say hi, meet some people, help with the transition. I made arrangements to leave work early so I could pick him up and get him there before it was over. We arrived and discovered the brass section in the band room. I told The Boy we would wait until they were on break to enter, so as not to disturb them. After waiting for a good bit with no break, he wanted to find the woodwind section to see how many of his friends from last year were in attendance.

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He loves it so much..

We found them in the library and were welcomed in by the band director. We sat and listened for a bit, and decided to head back to see if the brass were on break. They were, so we walked in, and The Boy’s middle school director was at the front of the room. I can’t quite describe the look he gave us when we walked in, but it was not pleasant. He didn’t say anything – not, “Hello,” not “Hey,” – nothing. No welcome, and no introduction for The Boy to this room full of kids who didn’t know who he was, save for a few. The Boy, oblivious, walked over to one of his friends and gave her a hug as she sat, and then I suggested we leave again, as our presence certainly did not seem to be welcome. We went back to the library and the woodwinds were being released back to the band room for a full rehearsal. The high school band director greeted The Boy again, and The Boy talked his ear off the whole way back to the band room. We listened for a bit to the full band play, and suggested again that we leave before everyone was released, and The Boy agreed.

He may be oblivious, but I am not.

While thankful the high school band director at least had the sense to appear welcoming, I’m sad that none of the high school students had the wherewithal to introduce themselves to The Boy. I’m disappointed that not one of the three drum majors, students in high levels of leadership, recognized their duty to welcome a member, albeit a non-traditional one. I’m livid that a professional educator who taught my son for two years cannot even greet him, and would go out of his way to make him feel unwelcome.

And right now I’m at a loss. I knew this wasn’t a terribly inclusive group to begin with, based on The Boy’s friend’s experience last year, who is also on the spectrum, and lacked a single friend in the group even at the end of the season. I knew I wouldn’t gain any friends by forcing our way into the group, even with the weight of the law and human decency behind us. But I have not been so uncomfortable, and made to feel so incredibly unwelcome since I encountered mean girls in my own middle school experience. It was that palpable. Do I try to educate and advocate? Do I engage outside help either from school administration, the autism society, or the state band directors association?

Or do I give up?

Is this really worth it?

I don’t know. All I know is that this shouldn’t be.

New Member of The Boy’s Tribe

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The Boy adores his new summer day camp. They go swimming at the community pool three times a week, he has friends from school who attend, and they play Wii bowling – what’s not to love?

He also has a new member of his tribe. The camp director is a high school special education teacher from another school in the community, and she is amazing. Wanna know how I know? The Boy gets a huge smile on his face when I mention her, and he doesn’t do that for everyone.

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As I mentioned yesterday, he’s having some anxiety over absences again, exacerbated by one of his close friends being ambivalent about camp and intermittent with his attendance. Not only did the camp director figure out a way to entice his friend to come to camp (allowing him to do a few magic shows at camp), she has figured out a strategy to alleviate some of The Boy’s anxiety. She reasoned that his anxiety stems from not having control over whether or not others are absent, so why not allow him a little control over something else?

She said he is always letting her know when supplies are low (which is great because the staff does not), so she could have him do a daily inventory of supplies (and even campers!) with a clipboard. By allowing him input in tracking, it may alleviate some of his anxiety.

This, THIS, is the sign of a great teacher. One who actively thinks about her students and their needs, even outside of school (or camp) hours, and devises needs-based strategies to help them with their daily functioning and emotional state.

So, welcome to the tribe, Camp Director! The Boy can spot the good ones a mile away. Now we just have to get you to come over to our high school 😉

Waiting for Sunshine and Roses

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It’s been a tough week.

Somewhere there’s a list of life events that can bring you to your knees and if moving isn’t at the top, it should be. Moving into almost-finished new construction with only two adults, a pickup and a Hyundai wagon. In 90 degree heat. When one of the adults considers the other “a hoarder” for having stuff… Yeah, “stressful” is one word for it.

(Thank goodness for Poppy’s mad vacuuming and cleaning skills, and Grammy’s mad Boy-entertaining skills!)

And you’ve accomplished this monumental thing, moving an entire house in two days on top of constructing said paid-for home from the ground up, but you are surrounded by boxes and missing shower curtain rings, and where-the-hell-am-I-going-to-put-that stuff. (I swear I’m not a hoarder!)

Then comes an unexpected, HUGE bill in the mail to take the wind right out of your sails, and evaporates any semblance of excitement you had left, and you wonder how anyone ever gets a leg up…

Then one of The Boy’s best friends decides he doesn’t want to go to summer day camp anymore, and his absences begin to trigger meltdowns and anxiety every night and morning. The Boy lashes out and threatens not to go himself, even though he absolutely adores it.

And you’re supposed to go to work and do work things correctly when you haven’t had a good night’s sleep in over a week, you haven’t eaten since you opened that huge bill, and you’ve taxed your body to the limit. The worry and overwhelm seem to be taxing your brain even more.

Everyone around you is worried, too. Either about the same things as you, or about you, and there’s nothing to say or do. You just keep going. There’s no time or money to do anything else. And crying gets old. Deep down, you know this too shall pass, so you just continue to be until it gets better.

My Reflection

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This morning, pulling out after dropping The Boy off at Grammy’s, I actually thought, “Why do we always have rough mornings when I am the most stressed?”

I must be new here.

Autism knows no time schedule. It doesn’t take a break because I have a million things to do between now and this weekend, and not enough hours in the day to do them. Nor does it sit back and say, “Your right. This is completely irrational and poorly timed.” It is what it is, whenever the hell it wants to be.

But there’s more to it than that. The Boy doesn’t get upset and wound up in spite of my stress. He gets upset and wound up because of it. There’s no lack of empathy – that’s a complete myth. There is an overabundance of it. The Boy picks up on my stress, nervousness, anxiety, and mirrors it right back to me.

For some reason, this is a lesson I find myself having to re-learn again and again. Someday I’ll catch on.

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The Truth is

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We’ve been settling into our new summer routine this week, as The Boy’s Summer Day Camp run by the Autism Society started on Monday. We are working out our timing and logistics to get him there and get him home, and allow him time to transition. He has been rolling with it.

Until today.

Literally seconds before we were to walk out the door, he complained that he couldn’t find his key.

Uh-oh.

He has a collection of mis-cut keys from the hardware store and he pretends that each belongs to a vehicle that he “owns.” The various vehicles come in and out of favor, but he never forgets one. His pretend vehicle du jour is a Dodge Ram van that has been retro-fitted to be an ice cream truck. And apparently, he misplaced the key at some point between the time he left camp yesterday and the second we were leaving the house this morning. Unbeknownst to me.

90% of the time he has misplace something, he ends up finding it at Grammy’s house, usually under the bed. I tired to encourage The Boy to “look again” at Grammy’s and if he didn’t find it there, to “look again” at Camp, and we would “look again” at home this evening before we determined that it was “gone forever” and he would have to “get a new vehicle”. He insisted he had already looked, and it was gone. (If your kiddo is anything like mine, he scans the room at eye level and if he doesn’t see the thing he is looking for, it has grown legs and walked away. Heaven forbid he actually pick up the myriad things on the floor to look underneath for the missing thing.) He said he didn’t want to go to camp and began making a general ruckus. Then miraculously, the key appeared there at the end of the bed, even though Grammy knew it hadn’t been there before…

The thing is, we can try to prevent meltdowns all we want, but sometimes, they just come flying at you like a brick out of nowhere. And you just have to roll with it the best you can, and try to de-escalate the situation and keep your wits about you, always thinking about the next possible steps. We’re “if-then”-ning in our heads the whole time, instantly coming up with plans b-g just for every contingency. Would it have helped if I had helped him prepare for camp the night before? Maybe. But knowing my kid, even if we put the key in a safe spot last night, that doesn’t guarantee he gets it out after bedtime and moves it. And it doesn’t guarantee that it wouldn’t have been something else he decided he needed at the very last minute this morning.

The truth is, sometimes your best option is to just roll with it and forgive yourself for not having seen the brick before it hit you in the head. Sometimes bricks happen.Keys to the Sonic

Traveling with The Boy

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Tomorrow, The Boy and I depart on a school trip to Washington DC with his band. It is a short trip – only an overnight stay, with a ridiculously early report time tomorrow (let’s hope they haven’t changed that, too), and a ridiculously late return time on Saturday evening, but those two days should be packed with fun and excitement. As long as the weather doesn’t interfere (which it might), and as long as The Boy and I can handle our anxieties about changes to the itinerary, and not being in control of our activities…

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My anxieties stem from my former life as a band director, having taken groups on trips, and the amount of planning and forethought that should go into it. And the amount of communication with the chaperones. All of that should be happening, but as of today, I have no idea for what or whom I will be responsible. I don’t know with whom The Boy is rooming. I don’t know how seating will work on the bus. There’s a whole lot I don’t know, and that makes me anxious.

I’m anxious, too, about The Boy rooming with some other kids (how many? I don’t know…), and if he will be able to handle it. If not, he can always come to my room (I know that I’m supposed to have a single), and if they don’t like it, they can shove it where the sun don’t shine. I emailed the teacher on Tuesday just to make sure this was a fallback option, and haven’t heard back, so I take that as a yes.

The Boy is excited. He gets to travel and see some things, which he genuinely enjoys. He gets to (hopefully) hang out with some of his friends. But I hope he can roll with changes, and maybe not being able to sit by whom he would like, and maybe being put in a group of boys to sightsee, rather than his friends who are girls…

Keep your fingers crossed for us. I think we will have a good time, and I just hope we can keep our anxieties (mostly mine) at bay.

Anxiety about the Unkown

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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 worryAnd 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. :/

 

Orientation

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high schoolFor most, high school orientation is an exciting time. I watched the 8th graders sit quietly and listen to the high school administration and teachers speak in the auditorium, and afterwards wander the halls, almost running at times they were so excited to see their friends and figure out how the building was laid out. During the presentation they were told what classes they would have to take as a freshman, and that they may not got the electives they want because they build the schedule from seniors down. They were told about foreign language, core classes, Career and Technical Ed classes, and counseling services.

Not once did they mention IEPs or 504s.

Few teachers were there, and only two out of the three counselors for the entire 900-student population were there. It was not a night designed to speak to teachers, or counselors, even though they made themselves available in the hallway after the presentation.

I spoke to the band director who had been a no-show for a meeting the previous day during my lunch period (drove 20 minutes to the school, waited 20 minutes while he was in a meeting with the principal, drove 20 minutes back to work). He took the wind out of my sails by saying The Boy may be able to participate in band second semester if they add a second, more remedial band like they hope to, but that was pretty much our only option at this point. This Boy who adores band, probably has perfect pitch, and wants to be a band director…

I attempted to speak to the counselor in the hallway to find out just how all of this scheduling would happen with us, but another parent cut right in front of me, and by that time I was frustrated, tired, and hungry so we walked away, and I allowed The Boy one more stop in our wandering tour before leaving.

A registration form came home two days ago, and since, again, I had thought this would be handled by the IEP, I emailed The Boy’s special ed teacher, the one who coordinates his program and the IEP meetings. She responded that she is on indefinite medical leave and had no idea, maybe I should email Mrs. X…

I asked The Boy how long his teacher had been gone. “Since last week,” he said.

As a result of all of this, I am disappointed, anxious, angry, and frustrated. And my attempt to meet with the director of special education was met with a promise of a phone call. I’m afraid if she does follow through with the phone call today, she may get an earful.

Special Education should not be an afterthought, an attempt to comply with the law. Special Education should not be something separate that isn’t talked about. Special Education should not be a reason to exclude kids.

And I should not have to pull teeth to find out information about my child’s educational experiences and program in the coming year.

This is unacceptable.

No Info

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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-technologyLast 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 :/