A family's story

Posts tagged ‘school’

Catching Up

The past few weeks have been a whirlwind. The boys started school. Hubz left for another business trip to China. My PTO involvements are starting to ramp up. And we opened Tate’s domain last week because he is eligible for his 3-year evaluation. 

As for school, it was a relatively smooth start, considering all of the changes and upheaval. There was a new main office to walk through and new therapist offices to familiarize themselves with. Tate’s teacher is on maternity leave. He’s pushing into the mainstream classroom for morning announcements and the pledge. Jake is in 5th grade–his last year of elementary school. He has a new resource teacher for part of his classwork. Cole is attending full day kindergarten, and he’s EXHAUSTED at the end of the day…but you know what? We prepped them well. After initial anxiety all three boys are settling into a routine. 

Our district also adopted new math and literacy curricula this year in order to align with the Common Core more directly. That could be an entire post in and of itself. Maybe one day when I have more time. Let’s just say I’m not sold.

Hubz left for China the day after Labor Day. I handled the Curriculum Nights and the first go-rounds with homework without his backup. Let’s just say there was shouting and some tears…and they were all mine. My poor boys. My anxiety is apparent, and I try not to take it out on them, but you know, I can only do so much. We’re getting through it, but man, it’s tough. I really do not know how single parents do this every.single.day. They have my utmost admiration. They really do.

I somehow volunteered to co-chair our school’s walk-a-thon. It’s one of our biggest fund-raisers. So I’d better not muck it up! I took it on thinking that we’d found volunteers for the Red Ribbon Week initiative that I had been co-chairing, but no, it was a new parent who wanted to “shadow” someone. Sooooo, I’m still running that. Of course both are in October, so in addition to everything else, I’m planning these events. I guess I don’t have to worry about what to do with my “free” time these days. 

And, finally, Tate is up for his 3 year evaluation. So much emotion and anxiety go with that. I know he’s on his own trajectory, and I’M okay with that..but it doesn’t mean that the district is. Ya know?? I about threw up when I heard during Cole’s kindergarten curriculum night that they now expect kindergarteners (5 and 6 year olds, that is) to be reading at a level D in Fountas and Pinnell guided reading by the end of the year. Tate, a third grader, is just past that. *sigh* I try not to let that get to me..but dammit, it does. 

I dutifully filled out my BASC-2 rating scales and background history–again–and now, I wait. I know the teachers have to do their part. Luckily they are doing a full-re-evaluation. I know that he will show how much he’s developed and progressed. He’s come such a long way since 2011. And yet, for all of that, I know he’s not at an expected level. And that has its own set of concerns. 

I had my parent interview yesterday with the social worker. She wanted to know my concerns. Ummmm, where to start. Tate is deliciously quirky and marches to the beat of his own drum. He’s reaching that awkward time in school where more and more of his peers note his differences. They see him expressing excitement and anxiety with flapping hands or a little stomp dance. They hear his echolalia and his scripts. To them, they don’t have anything to do with the current topic or situation. To Tate, and to those of us who know Tate, well, we know they have EVERYTHING to do with the way Tate processes the world. Sadly, some kids aren’t always so empathetic (funny, right, we talk about how autistic kids lack empathy or theory of mind, but really, I think it’s an individual thing, not an autistic thing). He’s an easy target for bullying. I have already heard him cry because he knew his peers (his instructional classroom peers!) were laughing at him. 

There’s the concern that we aren’t doing enough. That we’re doing too much. That we aren’t letting him gain independence. That we’re expecting way too much from him. Is he in the right placement? Should he be in a specialized program? Should we let him have exposure to “typical” peers…whatever that may be? That balance…oh, therein lies the rub.

I’m concerned. Oh, I’m concerned….but, I also know that we have to make choices…and then we fine-tune. If something isn’t working, we just adjust. We accommodate. We modify. We work.

So, that’s our life, in a nutshell, right now. We work. We worry. We prep. We adjust. Lather. Rinse. Repeat. 

They Belong

Last night I was feverishly putting the finishing touches on some teacher gifts for the boys’ “village”. I had 18, yes, EIGHTEEN, fantastic people to write thank you’s to, buy gifts for, and thank for a job well done.

As I was shaking a hand cramp out from using a hole punch to do some gift card magic (I NEED to stay off Pinterest), I saw a notification on my phone that Jean, who blogs at Stimeyland, had written a new post. I decided to take a wee little break from my sweatshop (seriously, I did say “feverishly”) and read her post. My heart sank. I wanted to cry. I wanted to scream. It was as if I had ripped a scab off of a fresh wound. You can read the post here. (And if you’re not well acquainted with her blog, I suggest you read some more…she writes some great stuff.)

Her son, and a couple of other kiddos who are in a segregated classroom because their learning styles are a smidge different from the average John Q. Student, were not included on a 5th grade “graduate” bulletin board. It took NINE weeks to get said kiddos on the board. And this was only after one of the other moms had raised her voice and then, in an act of awesomeness, took a picture of the three excluded kids and posted that sucker on the board.

Just this week, we experienced something similar…and you know what, it hurts. The boys’ last day of school is today. Earlier in the week, the boys got their long-awaited yearbooks. I know, I know…yearbooks in elementary school….but they are really well done, and this year we could personalize 2 pages for our children. So, of course, I had to buy TWO yearbooks. Clever, PTO, clever!!!

The first thing Tate did when he got home from school was rip the yearbook from his folder. He shredded the plastic off of that sucker faster than I could say, “hang on!”. Looking at pictures of his friends is highly motivating for him. It always has been. He opened to the front 2 pages that I personalized. He carefully looked at each picture. The impulsivity that we usually see was gone. He was calm. He was smiling–from ear to ear. He was touching each picture of him and his classmates. He was in his happy place.

After perusing his personalized pictures, Tate wanted to see his class picture. Who wouldn’t? Now, I don’t know if all districts are like this, but in ours, the self-contained classrooms do not get their own pictures in the school year book. Privacy and all that jazz. (I, personally, don’t care, but I get it…) Tate went to the general education class that he pushes into. There he found his beaming face from September. He also found the 3 other kiddos who push into that classroom with him. He wanted to know where his other friends were. I told him to turn to the next page.

We turned the page…. And the 4 other children from his classroom were not in there!!!!! Three of them made the candid photos on the other side of the spread, but there are 4 children in second grade who did.not.get.into.the.yearbook. I kept looking. I checked Jake’s yearbook. They weren’t in there either. It was totally an oversight..and NO ONE CAUGHT IT. And insult to injury?! The group photo from a class party (every class has one group photo on the candid page) doesn’t include the 4 kiddos, either. Tate’s class does…but this one didn’t. (I was not on the Yearbook committee…but I have now offered my services as a proofreader and copy editor…I kind of did that before I decided to quit my outside job.)

I am hurt. We’re all about “inclusion”, and yet, it is very clear that sometimes, we don’t belong. Do you know how that feels? Chances are that everyone does…and it really stinks. I know it was human error and oversight..but seriously…FOUR SECOND GRADERS WERE LEFT OUT OF THE  YEARBOOK..and that’s not right. They belong, dammit. They belong, they are a part of that school, and they should be in that yearbook. They spend 10 months, give or take, with these other children. They eat lunch beside them. They play dodgeball in gym with them. Some even participate in science or math with them. And to leave them out of the yearbook is total, utter, garbage.

I also sent a letter to the Yearbook chair to let her know. I copied Tate’s fantastic teacher. Know what? She was never asked to review the yearbook. Not once. And you know what? She would have caught this and made sure it was fixed…because she knows. She knows how fantastic each and every one of these kids are..and the special qualities that they bring to the table, so to speak.

There was an apology issued. The yearbook chair sent an email out to the teachers, and copied me on it. Tate’s teacher asked if she would send an apology to the families affected, and the yearbook chair did that too. The apology helps…and I am now a sitting member on the yearbook committee, so that should help…but for right now? It is fresh and it stings.

Simply: They belong. We need to be respectful of all of our school community. Every.single.one.

Heavy

I’m having a “heavy” day. It didn’t start out that way…as I crept up the stairs quietly this morning after my treadmill work-out, I heard Tate and Jake playing in their room. There were giggles. There was playful banter. It made me feel light, airy, and as if things were all right.

We all came downstairs, and Tate started to script about his teacher. He spent most of the time as he tried to fall asleep last night doing the same thing. She’s out for another 3 weeks due to medical complications/condition/crisis. I can’t imagine how difficult it is for her to be dealing with whatever she’s dealing with. And as a special education teacher, she has the added stress of knowing how much her absence impacts each of those kids…all differently. Tate is working through it. He did great the first two days back at school, but I think the reality of the absence of his teacher is really hitting him. I let him script, and I started to lose that light, airy feeling from earlier.

As we ate breakfast, Hubz started to chat up the boys about Science Night. See, our PTO is sponsoring a Science Night at the school. Hubz is planning on taking Jake and Cole. Tate might be up for it…or might not. He’ll be a game-time decision. Hubz was trying to talk it up to the boys this morning. My engineer husband lives for science. Jake, who typically loves science, started to poo-poo the idea of attending the science night. A cloud covered his face. His body language changed. He started to put up a few barriers. For Jake, Friday night  means putting on pj’s, watching a bit of TV and eating some snacks with all of us at home. Hubz tried a different approach…showed him a few pictures of some of the experiments that will be done in the presentation. Jake conceded to going, but he’s not excited about it. He then perseverated on it the rest of the morning. Tried to convince us that he was excited to go. (More like trying to convince himself that it’s going to be fun.) Cole is game for anything. I know he’ll love it.  I felt a bit heavier.

During car pool this morning, the kids were talking excitedly about being able to get outside and enjoy the snow over the weekend. Depending on how much rain we get, there should still be enough snow for the kids to fashion into forts and snowmen and snowballs, etc. Jake made a little squeak sound that he tends to use when he’s genuinely excited. Upon that squeak, the neighbor boy fished for Jake’s attention. He made sure to tell Jake that his sister (who was sitting next to Jake and is Jake’s age), yelled at him (the neighbor boy) the other day in their mini-van for making “weird noises like Jake”. Our neighbor boy made sure to tell Jake that his sister said it is annoying and very weird. Jake got quiet and started to ramble, as he does when he’s embarrassed. Our neighbor girl turned a nice shade of crimson and hit her brother. She tried to back-track with Jake, and he mumbled that it was ok. (But I know it wasn’t.) I asked them to all be considerate of each other and be nice. I wished them a good day and as Jake kissed my cheek goodbye, I had to look away so he didn’t see the tears welling up in my eyes. The heaviness started to weigh on my heart.

Once I dropped Cole off at preschool, I did a quick Target run. I needed a few toiletries, and wanted to get a couple “active” clothing items while they were still on sale. As I was checking out, my phone began to ring. It was the school. As I answered the phone, the boys’ school social worker first let me know that there was no emergency (so that at least calmed my heart-rate down), but also wanted to know that she had Tate in her office. He was using A LOT of “potty” talk AND was echolalic with the word “guns”. It had been going on since he was in bus line this morning. My heart sunk…ugh. She said that the moment he walked into the school (where there is a picture of a gun with a “ghostbuster” sign over it because of the new concealed-carry law in our state that allows people to have concealed weapons on their person…just not in a school), he started saying, “No guns”  constantly. Every time he said it he got a reaction. It was a vicious cycle. They took him to see the principal. He had to talk with her. (I can only imagine how that went.) Then he went to the social worker’s office, and they did his social story about expected language at school..and expected behavior. He calmed down and regulated, so she wanted to call me to let me know what had happened, and to let him talk to me.

Tate struggles with the phone and conversation. But he did tell me he was sorry he said potty words. And then he said, “Mommy, I can’t say “guns” or “no guns”. I need to try something else.” Well, at least the social story stuck with him. I asked if he was feeling ok. He said, “Yes I am.” I asked if he wanted to stay at school. He said, “Yes I do!”. So, I chatted briefly with the social worker. We agreed that the absence of his teacher is really hard for him. We also agree that he REALLY, REALLY wants to have the attention of his peers. Unfortunately, social situations and interactions are difficult for him, so when he’s already overloaded (as he is with the absence of his teacher AND the getting back into school routine), he falls back onto reactionary measures to get any type of attention. And it works.

Thankfully the social worker gets it. She is going to work with the class a bit more closely. They are all out of sorts. She’s going to work with Tate on conversation and attention starters that have some more positive connotations…and hopefully he can use those in his toolbox to interact with his peers. She’s also trying to figure out how to get rid of the signs..or a work-around them because we know that they have to be there legally.

And now, I feel quite heavy. I’m pushing through the heaviness…I am. But I am also allowed to feel it and to let it speak to me. I am using it to try to understand the “why” behind my children’s behavior. And it is helping me formulate some reaction to today’s events. It really is.

P.S. The more I think about it, the more I am irritated that Tate had to talk to the principal. Seriously, he’s not saying the word to be naughty or to be a menace to society. He is anything but that. He is truly using the words to provoke reactions from his peers so that he can interact with them. He needs guidance with navigating the social waters at school. And they need to take those damned pictures of guns down. Because, really, when it comes down to it, my autistic son, and others, have been taught to respond to visual cues their entire lives. You can’t put a picture like THAT up on EVERY.SINGLE.ENTRANCE of a school and expect kids NOT to have a reaction. For seriousness’ sake!!!!

What If

The bold title of the email flashed across my phone. LOCKDOWN AT ES1 and MS1. Those are not words a parent wants to see.

I felt my heart pounding. My kids don’t attend either of those schools, but we know people whose kids do. I was driving, so I couldn’t open the email. I was so worried. My mind started to think of what could be wrong.

My phone started to ring. It was the district’s notification number. I answered it. The superintendent’s voice announced that the elementary school was in a “soft” or Code Yellow Lockdown. The middle school continued to b in a “hard” or Code Red Lockdown. A student allegedly brought weapons to school. The student was apprehended by police. The police were investigating with district officials.

I suddenly realized I’d been holding my abs in really tightly. I exhaled and relaxed. Subsequent communications revealed that the elementary school was in the all clear. Then the middle school was cleared.

Considering that we are just days away from the one year mark of the Sandy Hook tragedy, I got upset to my stomach thinking of what could have been. And so very grateful for what was, in our town, “just” a lockdown and nothing more.

The final message from the superintendent stated that all typical activities would resume for the day.

Our district, our community, was fortunate today. I hope upon hope that the student involved gets some help, and that the students at both schools are able to overcome the distraction that today introduced into their lives.

He’s a Rockstar

Last night the second graders did their music performance. It’s the same one that Jake did 2 years ago. I was a little “meh” about going, but Tate was so excited about it that we couldn’t miss it. They have been practicing for this performance since the beginning of the school year. And it showed.

All of the second graders were up on that stage, singing and dancing their hearts out. In the middle of the group, front and center, was a cute little boy with wavy brown hair and a 10,000 mega-watt smile.  That little boy was having the time of his life..and it was contagious. That little boy? Well, that was my kid. Tate had been practicing just as long and hard as his peers. He even stayed late one day at school to rehearse with the group. His teacher provided his “spot” (literally, it’s a red circle that says “I stand here.”). He was very religious about staying on his spot. And he sang. And he danced. Oh, how he danced. He smiled–no, he beamed. He shouted out to me, waving and smiling broadly each time he caught my attention. He called out and waved to his teacher. And to his aides. And to the music teacher. He engaged the crowd. He played the crowd. He was in his element.

I beamed because I know how much EVERYTHING went into making that recital possible for him. The social stories with his social worker. The aides giving direction during music class. The music teacher prompting him when needed. His special ed teacher providing visual supports. The encouragement from all facets involved that he could do this. And Tate. He managed his anxiety (he watched the ceiling fans when he started to get overwhelmed). He managed his fear of loud, unexpected noises (when infants/toddlers cried and screeched, Tate flapped and rocked slightly and asked quietly, “what’s that?”). He managed seeing all of the adult faces out in the crowd that were unfamiliar. (He just looked for people he knew and smiled and waved and sent shout outs…see, he’s a true, for-real rock star!!) Sure, he threw out a few “cuckoos” and silly words…but he didn’t shout them. He listened and followed the prompts given to him. It was, well, perfection.

To be fair, Tate has always loved music. He listens to it with his ears, and FEELS it with his whole body. There is something truly magical about watching Tate when he’s singing or dancing to music. Everyone should be able to experience it like he does. I wish I could. He is deliriously happy when music plays.

Suffice it to say that last night, last night was one of those moments. The ones that we’ll talk about when the going gets tough. The ones that we’ll think about when we’re down and smile and feel the warm fuzzy to keep us going. Last night was his time to shine..and he was an absolute rock star.

End of the School Year

Those of you who come around here often know my boys struggle with transition. It does not come easily for them, and it takes a lot of work and preparation in order to get them through some of the bigger ones. We have been prepping for the end of the school year for a while now..and we’re still not quite “there” yet. But we have to be…soon…because on Tuesday my boys will be done with 3rd and 1st grade.

I must admit, every year since my boys have been in school, I cry on the last day. I can’t quite explain it, but it’s an emotional response to my boys moving up and onward. Maybe the transition preparation is as much for me, as it is for them. 

I know that I am going to have tears streaming down my cheeks on Tuesday as I send them off for their last days. Both Tate and Jake have made progress and gains this year. Jake is doing math, people. Math.Something clicked this year, and he is finally able to do simple math without breaking down or turning into a puddle. He is reading chapter books. CHAPTERS!

Tate has made social connections to the peers in his class. He talks about his friends. He has even had a crush! He has spontaneously mentioned activities that have gone on in the classroom. He has told us about his day. And it is not a script. Six months ago, that wasn’t happening!!

So, you’ll have to excuse me on Tuesday as I wipe the tears from my eyes…tears that release the relief that we’ve made it–successfully–through another school year. 

A Good Team Makes a Difference

Our teachers and principal are working on assembling next year’s classes. They’ll have them done by May. At the PTO meeting earlier this month the principal explained the process for class formulation. The teachers work together and assemble classes in groups. They look at the different needs and abilities of all the students and put them together. I can only imagine the drama that takes place when trying to create the classes.

Our district does not allow for teacher requests. Instead, we are encouraged to write the principal a letter with information about our child that we believe may help in class assignment. The teachers do their part, and then the principal assigns teachers based on the classes and parent and teacher input. 

We, as parents, are permitted to ask for our child to be separated from other students if there is a known issue. Last year, I asked that Jake be separated from a girl who was a best friend, but who also took over the reigns too much and bossed him around. That request was met. This year, I asked that he not be put in a classroom with a boy who I know has been bullying several of the kids, including Jake. 

Last year we had a meeting at the end of April to talk about Jake’s progress since his updated district evaluation and new supports were put into place. I never mentioned a teacher, specifically, but I was very clear about the type of teacher that Jake would benefit from…and they knew exactly who I meant…and he did get his fabulous teacher. His third grade teacher will hence be the benchmark for fantabulous teachers to hit. She has been phenomenal. 

How phenomenal? Let me list the ways….Reads and understands the accommodations in the IEP–check! Works with the resource teacher to make sure Jake is appropriately challenged and kept from frustration–check! Works with the social worker, speech therapist, and OT to make sure Jake is getting a fair shake at education–check! Communicates frequently with the rest of the team AND Jake’s parents (that would be me & Hubz)–check! Asks questions about Jake and how he’s doing–check! She has been a DREAM!

Earlier this week she stopped me outside of the school. She wanted to confirm something that she couldn’t find in the IEP…during Jake’s annual IEP meeting in October, we had discussed how smoothly his transition into 3rd grade had been. It had been so stress-free and comfortable. He didn’t take forever to get acclimated to the new grade. It was smooth. We all acknowledged that a huge part was that he knew who his teacher was and where her classroom was and that took that anxiety out of the picture. We all discussed, and noted, that for subsequent years, we could have Jake meet his new teacher at the end of the school year, visit the classroom, and get comfortable.

When I met with Jake’s teacher and resource teacher in January/February/March to discuss the behavior and coping struggles Jake was having at that time, we discussed that again..and it was implied that they would meet with his new teacher to give her (all the 4th grade teachers are women) some insight into Jake…and we talked about how nice it would be for Jake to meet her before the new school year..and how that would help him transition in August.

Apparently during class formation meetings, though, there was some push back on this agreement. It wasn’t written into the IEP…and yet, 4 different people who were in the meeting had it in their meeting notes. Jake’s teacher said she KNEW we had discussed it, and that she and Jake’s resource teacher felt it was imperative for Jake to meet his 4th grade teacher ahead of time. I agreed.

I ran home and poured over the IEP. It wasn’t in there. FRACK!!! But, I had my meeting notes, and there it was…in my notes, “Follow up with team in spring re: Jake meeting new teacher.” I had circled it and starred it. Obviously that was important. So, I sent an email to Jake’s resource teacher and cc’d his homeroom teacher. I was more than willing to request a meeting to get this formally into the IEP via an amendment. 

Both responded back within about an hour…the principal was going to grant the request. Jake could meet his teacher the week of Memorial Day, visit the classroom, and stop by a few times before the end of the year…so he could get comfortable. Jake’s resource teacher and I discussed adding it as an amendment, though, so that it would be in there IN WRITING.

We are lucky. We are blessed. Don’t think for a second that I am not grateful for this allowance. I know sooooo many schools where this wouldn’t be allowed to happen. I am eternally grateful for our son’s team…for 3 of them who were willing to go to battle for Jake so that he could start 4th grade on the right foot. You bet your bottom that when we do Teacher Appreciation Week in 2 weeks they’ll be getting the works from the House of Hope family!!!

 

Heavy

I met with Jake’s teacher and resource teacher today. They are seeing the same regression that we’re seeing at home. The inattention. The lack of focus. The copious amounts of impulsive behavior. The loss of independence. The loss of our “Jake”. In the 2 weeks since he’s been on the new medication he has lost so much. Yes, the tics have stopped being so pronounced, but he’s anxious, perseverative, and impulsive. Off the record, there are rumblings of a self-contained classroom next year if he doesn’t start improving. Self-contained. 

All of the glorious progress that we saw from last February until the end of this January seems to have vanished. *POOF* Jake is requiring constant input from his teachers. He is melting into puddles on the floor and in his chair because the work is too hard. It’s just too much. He’s falling back on the old pattern of depending on his old friend rather than branching out and playing with the boys. He’s requiring more help with self help chores at home. He needs constant reassurance and his anxiety is through the roof.

We all know he is capable of achieving great things. He is making such strides. Or was. I have to get him off of this medication. It is ruining his life. Literally. He knows he is out of control. He keeps talking about his brain going crazy…and he has been writing so many notes of apology to me, Hubz, Tate and Cole when he’s impulsive and inadvertently hurts one of us. It’s breaking my heart.

It all feels so heavy. All of this. The worrying. The parenting of a special needs child. Of two special needs children. The calls to the doctor. The shuffling kids from therapy to therapy. The insurance EOB’s that pour in. The expenses. The knowledge that my children are different, wait, that their neurology is so different and that they just don’t fit quite right into the standardized world.

And as heavy as it feels, I know I am not alone. I know there are other parents out there struggling with “the weight”. I do find comfort in knowing that there are others out there who understand..and who understand that when I say “this sucks” and “it’s not fair”…they know that it’s just my way of processing through the hurt of seeing my children struggle. So, even with this heaviness within me, I will pick myself up, and keep moving…because I have these beautiful children who deserve no less. And I will hang on to the hope that I’ve seen before..that my heart knows is out there for a better day.

 

 

IEP Season is over…whew

Well, as anyone who has a child with an IEP knows, IEP Season is never over, but our annual meetings have been held and are in the record books. Shew. That bluster of air? That’s not wind..that’s Hubz and me exhaling. This year our IEP meetings went fairly well. There was give and take, discussion, and some really, really good plans put into place for each of our boys. I had updated on Jake’s IEP meeting here.

Last Thursday we had Tate’s meeting. We had received his draft the week prior, which is awesome. I need to check the laws to see if this is now standard in our state, or if it’s just a new district-wide thing…whatever it is, I love not having to beg for a draft prior to the meeting. I like having some grasp of what they are trying to implement for the next 12 months, and I like to feel intelligent and able to ask pertinent and pointed questions without scrambling. It definitely helps me feel calmer about the whole process.

I was a bit annoyed, not with the school, but with our ABA director. Back in the summer she had asked to be a part of Tate’s IEP meeting. I had let her know the first week of September that his teacher wanted to schedule for October 11th. I never heard a word. I spoke to the coordinator about it in mid-September when they all met (sans director) to discuss Tate’s ABA programs. She sent 3 emails and a few texts. Nothing. I sent another email 2 weeks prior to the meeting.  And another a week prior. I left a message. The therapists left messages. His teacher called her, and she wouldn’t talk until she saw a release from me. (I had one on file with the ABA director, too…so I don’t know why she made the teacher fax one in..but whatever.) They talked briefly, and the director decided that she didn’t need to attend, but she wanted to see the draft of the IEP. The day before the meeting. I scrambled. I got it to her. She sent her comments. It was a lot of rigamarole, but we got it done.

Back to the meeting….Hubz and I showed up, with the draft and our and the ABA director’s notes. We had our “Binder of Power” with us…it has our boys’ neuropsych reports, prior IEP’s, notes, assessments, and most recent report cards. Tate has a whole section on ABA programs, too. It’s big. And red. And screams “Don’t mess with Us, we know our shtuff.”

We did the greeting and introductions. Then we dove right into the nitty gritty. Everyone did their PLOF.  I can’t argue with anything they said…except that in the social/emotional area, there was some sentence in there about how “Tate does not get along well with neighborhood peers.” WTH?! He gets along ok…more often than not he’s on the periphery, but he isn’t antagonistic or nasty. I asked to have it removed, and they agreed. I know that this section is necessary, because it establishes where Tate is at with all of the various areas, but still, it absolutely, without a shadow of a doubt stinks. I really dislike reading about what he can’t do. However, I do like that each of the therapists and the teachers included a few of the things that Tate CAN do…it is nice to hear the positives. It helps soften the blow with the deficiencies.

I’m not going to bore you with a play-by-play of his goals and objectives. That would be about as tortuous as it was to sit in the meeting. However, I will say that Hubz and I asked for a few peer-interaction goals, seeing as that Tate’s greatest area of weakness is socializing with peers. The social worker was more than willing to add peer goals, and the district behavior specialist, who sat in on the meeting, gave some terrific suggestions for implementing peer socialization with some of the other classroom goals. This year, Tate’s team is going to try to help him improve his handwriting (trust me, it is abysmal), strengthen his visual coordination, regulate himself with strategies taught by the occupational therapist and social worker, and strengthen his academic skills in the areas of reading, writing, and arithmetic. (For the old folks out there, the “Three R’s”.)

I mentioned the behavior specialist. She attended the meeting because while we were there, we did a domain for a Functional Behavior Analysis. Per discussions we have already had with his team, Tate would benefit greatly at school from an analysis of his environment and his behavior in that environment. Then, the teachers, therapists, and behavior specialist can formulate a Behavior Improvement Plan to help him function  more successfully in school. I know I have talked about this before…but we made it official on Thursday. The district now has 60 days to complete the FBA and formulate the BIP. We will meet again to discuss once it is ready. In the meantime, his special ed teacher and the therapists have had some training with the behavior specialist to try to address the excessive scripting in the interim. They are having some minor success, so I guess that is a good start.

I am relieved that we are all on the same page. I am grateful for a team that is willing to work with us, and to help us understand why they put certain goals in place for Tate. I am confident that with this team, as well as his ABA team and us, he can progress and achieve these goals. As a parent, it was encouraging to watch the entire team, all seven of them, sit around and discuss, TOGETHER, how they could better help Tate succeed. It was amazing. They took ideas, brainstormed, hashed them out, defined them, made them measurable. It was fantastic. Truly, it was one of the most productive meetings we have been a part of since Tate started in special education three and a half years ago.

When we were done with our meeting, Hubz and I thanked everyone for their time and their energy and efforts. We know they are overloaded. We know they are being asked to do a lot with fewer resources. And we told them how much we love what they are doing for our son…and for our family. I told them that I was grateful for their willingness to change a few things in the IEP, and that I was sorry to create a little more work. The Special Education Coordinator said that it was not a problem…they want to help Tate, and if we need to change things, it is always ok to ask.

There you have it. We are in a pretty good place with solid plans ready for each of our boys. I have very open communication with their teams and teachers, and I think it is the most solid footing we have been on in regards to a school year, ever. I have great hopes for 2012-13.

And, yeah, IamsogladitsoverandIcantakeabreath…whew. For now. Until the next thing. But today, today I will relax, knowing that we are in a good place.

That Familiar Beast

Oh, anxiety…how’d I’d like to take you in a dark alley and teach you a thing or three for messing with my son. Mess with me all you want…I can handle it, well, kind of. But my kid? My beautiful six year old boy?! My child who already has so many obstacles to tackle each day? Why must you torment him? You are literally tearing him apart.

About a week ago, Tate’s sleep patterns started to change. He was fighting sleep, even if we let him sleep in Jake’s room. He was scripting prior to falling into a restless slumber. He was waking in the middle of the night. He was roaming our hallway. He was cracking his neck. Ugh…that sound of cartilage and tissue grinding against each other. There is nothing quite as ooky as that sound. Tate was doing it over and over and over. Then the leg thrashing. Then the pacing. Oh, Tater…

Late last week Tate asked for the first time if he could please not go to school. He was quite polite and did use please. When I told him that he had to go to school, the look of sadness, while fleeting, was there. It broke my heart. He likes the routine of school. I know he likes his teacher and his aide. He knows most of the kids in his self-contained class from last year, so I know that the social anxiety couldn’t be any higher than normal. But the anxiety was there…is there.

Our ABA therapists have been tracking it. They are recording the frequency of his “anxiety” scripts. We all know which ones he pulls out when everything is just too much. The ones about worms, and bees, and potty talk. The ABA coordinator is writing a program for dealing with Tate’s scripting and a few other behaviors that manifest when anxiety takes hold. It cannot come soon enough.

The one therapist mentioned that the anxiety is starting to interfere with his progress. He is so anxious about not being able to complete a program that he can’t even get started on it. Or if it is a new program, he gets anxious about it because he hasn’t done it before. His OT mentioned the same anxiety. He is introducing a few new regiments into the therapy hour, and Tate literally climbed the wall yesterday. (The rock wall in the therapy room.) Oh, Tater…

And, finally, I got a phone call. My first, “Mrs. Hope” call. You know the call. You know that tone of voice the teacher takes on when s/he has to deliver some news that s/he knows you will not like, but need to hear. The breath caught in my chest as she said it.

I would like to ask the district’s behavior specialist to attend our IEP meeting in October. I’d like to have her come observe Tate in the classroom, and help us write some behavior plans. Also, to help give me and Mrs. Popp (the aide), ideas for how to better help Tate when his anxiety is taking over. I want to open a domain for him. Are you ok with this?

Yes. I welcome having her observations and recommendations. We’ve noticed his anxiety spiking at home, too. What is happening at school?

Well, uh, lately he gets so anxious towards the end of math. All I can think of is that last week he wasn’t quite done with his worksheet, and the other kids were already heading outside, and maybe, uh, he was afraid of missing out at recess…so now, every day since then he has gotten super anxious the last 5 to 10 minutes of class.

So, the transition period? Yeah, he’s really struggling with transitions with me and my husband at home. Chill time to homework. Chill time to dinner. Dinner to bath. It’s, well, I’m glad that you told me this. Would you mind tracking it a bit? See, we met with Tate’s psychiatrist the first week of school, and she was hesitant to add any anxiety meds to the mix. She wanted to see how he would do as school got established..but, yeah, this is not good. So I just want some data to bring to her. And, thanks again, for asking about the behavior specialist. I agree…something needs to be done.

I can track it, sure. And then I’ll go ahead and write the request for [behavior specialist] to come observe. I really just want to help Tate in school. He’s a bright kid, but this anxiety..it’s just really interfering. Thank you for agreeing to it.

No problem. I appreciate you taking the time to try to address it. I know it’s been bad lately. His therapists are noticing a spike, too. They are trying to write a program for it, so they can address it here in therapy, but it would be great to get some generalization into the classroom, too.

Thanks, Mrs. Hope. I’ll send home the updated info later this week.

We ended the phone conversation. I was a bit crushed. It’s everywhere…this anxiety beast. It’s taking over Tate’s life. He can’t escape from it at all. As his anxiety increases, his ability to attend decreases. His focus is lost. He gets lost in that world of his, which is not so happy right now. He can’t sleep. He can’t eat. He roams around scripting and not clearly communicating. Not all of the time, but during portions of his day. Portions of his day that he should be using to learn, have fun, sleep, recharge…and instead? He’s fighting with that ugly, overbearing beast.

So, now I jump into “everything’s rosy” mode to “let’s deal with this next issue” mode. Everyone is tracking his anxiety. Next, we’ll bring our information to the psychiatrist. Hopefully we can formulate a plan for Tate with therapy and some changes at home and school to help him successfully put that anxiety beast in its place…or at least out of his life for a few hours during day.

I know how awful I feel when anxiety takes over my life, and I’m a neuro-typical adult. I know that it won’t last forever. I know ways to help myself feel better. But my son? My autistic boy? He doesn’t understand. He knows this awful feeling and struggle..and nothing is making it better. He must be scared. So very scared. And that rips me apart…..

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