Communication Skills

Today’s timeline:

10:32 AM – I get an email from The Boy which seems to indicate that A) someone told him drivers’ ed is not available for him – unsure if they told him “never” or “not right now,” and B) someone told him that he can’t hug girls – an ongoing issue that the school has admitted they have no idea how to handle. Two negative interactions with authority figures, and he is upset.

11:18 AM – The Boy’s Business teacher emails me and the special ed teacher to say he had arrived 15 minutes late – an ongoing issue that I don’t believe has even been addressed, other than to mark him absent (?) – and also that The Boy sat down and began to “color.” When asked to put it away, he got angry and left class. (Why they insist on saying “color” and “coloring” as if he’s a toddler, I don’t understand. It’s super dismissive. He is drawing, but I digress.)

11:27 AM – The Boy’s special ed teacher responds, asking if he returned to class because he had brought his “coloring” stuff back to her room and left again.

12:09 PM – I respond asking someone to update me, and if my son is ok.

It is now 12:35, and no one has responded to me.

If he had an aide, like he had in middle school, the aide would have known he needed to decompress upon entering Business class, and explained to the teacher to let it go this time (and indeed, would have made sure he was on time to class). If he had an aide, she might have been able to help him regulate his emotions so he could stay in class. If he had an aide, they would no where my child was. If he had an aide, maybe she could respond to me to let me know my son is safe and sound.

Three weeks ago, something similar happened when he got upset upon boarding a bus for a field trip and noticing the girl he has an interest in was absent. I received emails from him saying he got left behind, that he couldn’t find his special ed teacher, yet no email or notification from the school. When I called, the secretary kept trying to put me through to the special ed teacher’s room, and there was no one there. Finally, I sent my mom over to find out if they even knew where my son was. He had started walking toward the highway, and the new assistant principal (who kept advocating for him to just go home with my mom) didn’t alert anyone that she had him. The principal and the police liaison got in a car to go find him… After my mom arrived, SHE called me to update me, and it wasn’t until much later that the principal called to tell me what had happened.

I shouldn’t have to wonder about my son’s whereabouts and safety. I shouldn’t have to contemplate a $500 monitoring system like AngelSense because school personnel can’t be bothered to let me know what’s going on.

I think The Boy is much better communicating, at this point, than school personnel. When/if they get back to me to let me know my son is safe, I’ll be requesting a meeting, ASAP. This is beyond the pale.

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A Few Changes

Like I tell The Boy, change isn’t necessarily bad, but it is inevitable.

I’ve done lots of thinking over the past couple of weeks about this blog – you may have noticed my “radio-silence”. SimpleIJustDo has provided me a great place to share and vent, a small community of support, and lots of self-reflection. As The Boy gets older, I am starting to feel like he is becoming the steward of his own story, and although this has always been a place for me to write about me and my experience being a mom to him (and never meant to replace his own story), I feel like I need to take a step back.

Let me be clear: This blog isn’t going anywhere. I will continue blogging.

But, I’m going to concentrate on quality over quantity. I need to balance my need to share and vent, and The Boy’s right to privacy and self-advocacy. I may post less and try to interact more via social media (if you aren’t following on Facebook or twitter, now might be a good time to look me up).

This will also allow me a little bit more time to focus on my long-term writing goals, too, which involves novel-writing aspirations (wish me luck!).

I hope you’ll hang on and bear with me through this adjustment period. We still have lots to share. But we may do it in a little bit different forum or format. As always, thank you for showing interest in our story. I’m still amazed at how far across the globe my voice can go!

Much Love,

~Annie

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Not goodbye. We’ll see you soon!

Negotiations

Yesterday, Grammy and I were texting back and forth regarding strategy to try to get The Boy to take the immunizations. She told me she wasn’t sure she could convince him to go ahead with the three shots he needed. “Bribery?” I suggested. I also let her know we could rescheduled if he just wasn’t ready.

She suggested to The Boy that if he went through with it, she would take him to his favorite place for lunch, a restaurant with pizza and video games called Ioanni’s. His reply was classic, “I’ll do lunch at Ioanni’s, but I’m not doing shots!”

Needless to say that was exactly how it went down, and when I picked him up, he was no calmer about the prospect of shots. He insisted that he was too old, and that he would have to miss school, as he did the last time. In the meantime, he had gone to the bathroom and put a bandaid on his leg to convince me he had indeed already had them done! Then he insisted we get them done on the Friday before Labor Day, as he had done before… In these situations, asking why will only make your brain hurt, so we just roll with it.

 

I told him they may not be open that Friday (I really just wanted him to get them done before school starts), and had already rescheduled him for this Friday – could that be our plan B if they weren’t open the Friday before labor day?

“Can that be our plan C??”

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So many backup plans…

“What would plan B be then, Bud? If they aren’t open on the Friday before Labor Day, when would you feel comfortable going?”

At first he said next Friday, but when I reminded him that he has a marching band show that night, he quickly changed his mind and said this coming Monday. Why? Again, I don’t go there.

I asked him several times if he was sure, and reiterated all of our plans to him a few times last night to make sure he was feeling comfortable about all the options. And this morning I called to reschedule for Monday.

What doesn’t seem rational to us neurotypicals makes perfect sense to him. He was just using reason in his own way. I’m glad we could negotiate a settlement, regardless 😉

Heads Up

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’…

What It Means to Be Not-Quite-Verbal

The Boy's self portraitThe Boy is verbal. He can speak in short and long sentences, has quite a vocabulary, and is an incredible speller. But not always.

When he was a toddler, he didn’t have as many words as his peers, and we ended up in speech therapy. We used flash cards to get him to learn nouns and actions. He went to speech twice a week for several years.

He now loves words, and particularly loves word play, and puns and jokes where double entendres are at the center. But, there are times when he cannot speak. There are times when it seems he refuses to answer. His teachers encounter this often, and it isn’t (as they too often assume) because he doesn’t know the answer. He simply can’t.

And he wants to.

A few Halloweens ago, he was trick-or-treating with friends and I was following with another mom. A couple of giggly girls recognized The Boy, and came up to say hi. After they went off in a different direction, I asked him about them. “Who were they?” No response. Knowing he probably knew but couldn’t tell me, I tried not to make it a big deal and we continued on our way. Shortly after, we arrived at a house with two cars parked in the driveway. “Mom!” he said. “Er, look,” he said, pointing to one of the cars. “You know, the girls…” he said. He was giving me a clue, and excited he had a chance to communicate with me. After a little back and forth, I realized the car was a Lexus… and the girl’s name was “Alexis”. Then he told me the other girl’s name through another clue (she had the same first name as his favorite teacher from elementary school).

If you first understand that there are times when he can’t speak, and then also understand that he wants to, and finally give him the opportunity to give you clues, communicating is possible. It requires understanding and patience, though. And discrete labels aren’t helping, either. So I’ll stick with “Not-Quite-Verbal,” and keep working towards understanding.

All Quiet on the Northern Front

On Father’s Day, we were up north, but I made sure The Boy called his dad. He spoke with him briefly, spoke to both of his uncles briefly, and spoke to his grandpa briefly. The call lasted 7 minutes.

I tried to think back to the last time they had spoken, and couldn’t think of a time since he had dropped The Boy off with us in January, at the end of his winter break. I checked my phone bill and I was wrong.  He did call once in March, and they spoke for 9 minutes.

For those of you keeping score, that’s 16 minutes in 6 months.

There hasn’t been any attempt to get any time with The Boy for the summer break, and there has been no discussion of when the next visitation might occur. Maybe it’s because I told him unequivocally in January that The Boy flying alone on a plane wasn’t going to happen any time soon. “It’s not a good idea,” were my exact words.

Is this the beginning of the end? One initiated contact in the past 6 months?

I don’t have any words. Just sadness.

when the school calls...

He Melted

Last Sunday, I found a flyer in The Boy’s backpack that said he had a performance this past Thursday, at the orientation for incoming 6th graders. I was a little annoyed at the lack of advance notice, but we rolled with it. I made sure his band shirt was clean, cancelled my Thursday lesson, and made arrangements for transporting his tuba.

Thursday evening came, and I picked The Boy up at Grammy’s. We rode out to his school, and I reminded him that it was ok if he didn’t see all of his friends after the concert (which has been a big source of anxiety and mini-meltdowns in the parking lot after events like this all year). He was anxious about it, but at least we were talking about it. When we got to the school, there were curiously no parking spots, so we parked a ways away, and headed toward the gym. As we got closer, I could hear drums, and I knew we were in trouble. Sure enough, we walked in, and his band was already playing. We waited for the song to be over, and I tried to get him set up behind the band, in the percussion section, quickly so that he could play along with at least the next song. He wasn’t having it, and knocked his binder to the floor. He was angry and feeling left out, and rightfully so. “I missed it! They played without me!” I told him I must have read the flyer wrong, and asked if he wanted to leave.

After the performance, the principal released the 5th grade families to tour the building on their own, and The Boy just lost it. He began walking quickly, shoving people out of his way, giving me the finger, saying he was going to throw his tuba at his band director and cut off his head. I could do nothing but follow and apologize to the people he was shoving out of the way. Apparently, at one point I got too close, because he grabbed me by the neck and shoved me against some bleachers, knocking my glasses off. I picked them up and continued after him. After much walking around the school, and a few hugs from band friends he saw, we headed back to the gym, where he did pick up his tuba and threw it across the gym floor towards his teacher, who was speaking with a woman at the time, and it hit her in the ankles. Again I apologized, and attempted to get The Boy to sit. He did, and the band director approached, hoping to assist me in calming him down. At this point, he revealed that it was, indeed, his fault. That the time had changed and he had announced it in class, but failed to let me know.

The Boy was still agitated, and got up to leave the gym again. But this time, it was for the parking lot. He was calming, and we were heading to the car. I had called The Man at some point for help, and he was on his way, although I’m not sure what kind of help I was looking for. I began to cry. The Boy asked why, and I said, “Because I hate to see you this way.”

We ended up leaving his tuba and music there – let them deal with it for now, and headed home where it took about an hour for The Boy to calm down. By then, he was ready for pizza, and even played my trumpet a bit.

This didn’t have to happen. I’ve told school personnel, including the band director for multiple years that The Boy cannot reiterate to me what is said at school. Apparently saying it ad infinitum is not sufficient. But the band director learned from this. He apologized three times that night (and not once did I say it was “ok”), and called on Friday to express his apology again. I can forgive a young teacher who knows he messed up big time, if it looks like he learned from it. I cannot forgive the principal and assistant principal who initiated the change, made no accommodation for affected students (how many robocalls do I get from the school per week, and this wasn’t on any of them?), and didn’t lift a finger to do a thing on Thursday night. In any school, the buck stops with the principal, and this woman and I are like oil and water. She is not my friend, nor is she a friend to any special needs student. And she quite likely will be the subject of a letter to the Superintendent before the end of the year.

In any case, we are lucky that we do not experience these catastrophic meltdowns on a more frequent basis. The last time something like this happened, The Boy was about 10. The problem is, he is now almost 15 and bigger than me, and can apparently remove me as an obstacle (or at least attempt to). This scared The Man, but not me. It just is.

But it is a helpless feeling, and it is something that requires recovery.

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Orientation

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

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 :/

How I Know

The Boy is what I call not-quite-verbal. He can speak, had years of speech therapy which started with teaching him basic words like “running” and “ball” with flash cards. He enjoys words a great deal, and finds puns and double entendres highly entertaining. One of his obsessions is “ugly sounds” in the band class, and when I remind him that reading The Hunger Games is on our schedule for the evening, he says, “Reed!” back to me, with a perfect imitation of the sound of a reed instrument squeaking. He then explains the joke, that “reed” r-e-e-d is not the same as “read” r-e-a-d, and which one did I mean? Haha.

But ask him what he did in school today? Crickets. Not a peep. Ask him where his field trip is on Friday? Not a word. It’s not as if he doesn’t know. He just cannot form the words. And due to his verbosity at school about his favorite topics, those who know little about him or about autism assume a lot.

Sometimes, they can't tell us what hurts. We just have to notice.He also will never tell me he is experiencing pain, which worries this mama. In fourteen years, The Boy has never once complained of a headache, but he’s probably had one. And he definitely will not tell me if his dad’s absence and lack of communication is causing him pain, either. I have always told The Boy that he can call his dad anytime he likes. He has never taken me up on the offer. He has difficulty talking to him on the phone on the rare occasions that his dad calls him because he has difficulty creating conversation, and his dad doesn’t understand the types of questions to ask.

But I can still tell. When getting dressed, he will switch from the t-shirt I chose to the Steelers t-shirt for the day (his dad is a Steelers fan and got him the shirt one Christmas). He will ask me random questions about what his dad’s cats are doing. Little things that let me know that he’s thinking about and missing his dad.

It’s a different type of listening. More of a “noticing,” but it’s a huge skill set we autism parents develop. We use it to notice the ways our kiddos self-advocate and self-calm, so we can help them replicate the strategy if it works. We use it to notice a budding new interest that we can encourage.We use it, as in this case, to notice when they might be feeling a bit low or lonely and need some extra cuddles and attention. Basic parenting, sure, but supercharged.