Our journey in the Autism Spectrum

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Trying and Tiring Anxiety

I’m trying to be understanding.  Compassionate.  Really, I am.  But son of a bitch! Henry’s anxiety seems so irrational, ridiculous even, these past several months!  I feel horribly guilty about this.  More often than not, I am so.tired.of.it!  I lose my patience.  A lot.  I get anxiety about his anxiety.  Just STOP it already!!!

Ok, bug phobia, sure.  I get it.  We’re working on it.  Five years of working on it but still, fine.  Whatever.  Waking up at night with panic attacks is a little bit trying. Sometimes more than a little bit; Henry waking up out of a dead sleep (because we do check on him and KNOW he is, in fact, sleeping!)  saying he can’t sleep and crying and whining and screeching, unable to tell us WHY or WHAT is causing him such distress.  We try to calm him down.  He tries to calm himself down.  We remind him of relaxation exercises he can do.  He has a few YouTube videos that he can go to as well.  We’ve been to a psychologist to help us through this.  It was getting better.  Now it’s not better.  Almost-every-night not better.  He NEEDS to wear one of his dad’s hats to bed.  He MUST have one of my pillows or stuffed animals to sleep with.  (Yes, I have a stuffed rainbow chameleon. Don’t judge.)  We allow him these things, of course.  It does help.  Sometimes.  After what feels like hours of trying to talk him off a ledge.

The “newest” anxiety revolves around waiting for the bus.  For all of his school bus riding life, Henry has always had trouble dealing with the waiting for the bus, the worrying about missing the bus or the bus being late.  We’ve had complete meltdowns in our driveway over this.  Did I mention the bus stop IS our driveway? This school year he seems to be adding another layer to his worry.  This year he not only wants to go outside and wait for the bus 15-20 minutes earlier than he needs to be, but he doesn’t want to go out and wait alone.  On our porch.  With the front door open where Lucy sits on the couch and they can see each other.  He wants one of us out there with him.  Why? Because he’s afraid of flying bugs and now BIRDS.  But, you know, he can’t wait inside because he doesn’t want to miss the bus!!!!  Good gods, please give me strength!

This morning, as I finally aquiesced to sitting in the front room with the door open so we could see each other.  (Since Lucy had an early morning activity and was already at school)  I listened to him and watched him for 10 minutes, talking out loud to himself and pacing, pacing, pacing.  Repeating over and over, “I’m okay. I’m okay. I’m okay.”  All the while walking back and forth on the porch ducking from and swatting at invisible bugs and birds. Now, lest you think I’m so cruel as to sit inside and watch my son suffer through this, please know that he will STILL exhibit these behaviors whether or not Lucy or I are outside with him.  This morning I just could not bring myself to sit out there.  Sitting inside I can still watch him but look away, distract myself from his physical actions and verbalization.  Sitting outside with him, his anxiety just gets on my last nerve.  I’m not a morning person and I’ve barely had one cup of coffee before it’s time for the bus.   And his anxiety gives me anxiety.  Like there is a weight on my chest that I just can’t get rid of.

Perhaps it’s time to go back to the psychologist.  I kind of dread that.  It’s out-of-pocket until our deductible is met. That sounds terrible, doesn’t it?  I mean, I should put a price on my son’s mental health?  Still, it’s something we need to consider. More than the money, of course, I am most worried about anxiety meds being suggested.  Again.  I was really hoping we could get through this with some behavioral techniques and learned coping skills.  Meds can be such a slippery slope…though, maybe he needs that.  I don’t want him to suffer but I know sometimes adding medicines can add to problems with side effects, etc.

Ultimately we will do whatever we need to do to help Henry.  To help him be the best that he can be.  But this morning, well, this morning was downright painful and annoying and I just couldn’t deal.  I’m trying so hard.  Every day I want to help him so badly and I wish more than anything he didn’t have these anxious feelings. Some days though, I’m just tired of it.

 

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It’s That Time of Year…

It’s that time of year. And no, I’m not talking about Autism Awareness Month. For us, it’s time for the annual IEP. Time to schlep out “the binder” and review last year’s goals. Time for that painful rock of anxiety, that I try to keep pushed WAAAAAY down, to slowly rise from my stomach and stick in my chest and throat. Time for me to agonize over what goals  for next year in 2nd grade will be in the BEST interest of my son.

I vowed to stay positive this month of April for my son and for autism awareness. But as I reviewed Henry’s most recent progress reports my positivity faulters. Yes, he has progressed in every single one of his goals.  In fact, he even met his language therapy goal! We adore our SSD teachers, Mrs. T and Mrs. Q!  So does Henry! Lots of wonderful comments on his progress report…his IEP progress report.

His gen. ed. progress report is a whole ‘nother ballgame.  He still continues to have many “Needs Improvement” marks in every area and “Still Developing” in Written/Oral Language. (ummmm…so how did he meet his IEP language goal?)  His gen. ed. teacher is amazing!  I don’t think we could have gotten a better match!  Miss SB always has positive things to say about Henry and she always remarks on the improvements he is making every day.

And still…the anxiety is there.  The worry is there.  If another parent came to me and shared these kinds of thoughts about their child, I know I would tell them to keep moving forward, focus on the positive, work together with your team, communicate with your team.  Because as a parent, we know our kids and can advocate for them better than anyone else.  It’s all going to be OKAY!

Do as I say, not as I do.

This year I go into Henry’s IEP more experienced in the process.  Last year it took less than an hour and I came way very satisfied and as happy and hopeful as I could.  This year will probably go the same way.  I don’t know why I get so anxious.  Quite frankly, it’s exhausting.  Nonetheless, I will get through it.  Somehow.  As I do every year during this time.  I just have to pretend to be that “other parent”.  That parent that I would encourage, “It will be OKAY!”

Zombies vs. Princesses

[Ed. Note: I feel I need to preface this post to say that we do, in fact, love our school, our teachers, and our new principal. They have been nothing but understanding and supportive of all of our kids! But occasionally, it does seem we catch them momentarily off-guard.]

Friday I got a call from our school’s principal. Our  Kindergartener had been sent to the office for the third time last week. During the course of our conversation about my daughter’s infractions, our concerns that the behavior problems seem to be escalating, and how we might handle this situation, the principal, Dr. P, wanted to share with me exactly how Lucy was spending the time in her office.

Dr. P: Lucy has to sit in my office while she completes her work. She did a good job focusing on her task and following directions so when she was done I let her take a break and color some pictures. First, she drew some pictures of zombies.

ME: (with a little laugh) Yeah, that sounds about right.

Dr. P: Well, I asked her if she saw zombies on TV and she told me no.

I could hear Dr. P give a tiny sigh of relief. Thank the gods Lucy answered “no” because Dr. P had sounded a bit taken back by these pictures.

Dr. P:  (in a brighter, more reassuring voice) …and then she started drawing more normal things like a princess in a tower. You know, more typical things for 5 year-old girls.

ME: Well, actually Dr. P, zombies are kind of normal for us.

Perhaps I should have kept that little skeleton  in our family closet? (no pun intended.) Hey, at least I made no mention of the pirates, monsters, genetically mutated animals, and robots that routinely show up around the house!

Dr. P:  Oh…I see. Well, then..

I spent the next few minutes doing my best to sound like a “normal” parent who is relatively sane and very concerned about my daughter’s behavior. I was hoping to convince her  so we would not get a call from DFS (Division of Family Services) over the weekend. But truth be told, I’d pick zombies over princesses any day. Well, unless is was a zombie princess. Or a really cool warrior princess that could defeat zombies…

A Very Special Kindergarten Story

[Ed. Note: for the record I am getting this out there before my son begins first grade. I’ve been trying to find a way to do this book, this teacher, and my son’s peers justice. It was an amazing year!]

My son entered Kindergarten this past fall. Mainstream Kindergarten. After a few bumps along the way, my son’s extraordinary teacher gave me a wonderful opportunity to talk to the class about autism and specifically, Henry. In my opinion it was a great success.

If you haven’t read about my experiences, I’ve posted links here (otherwise feel free to skip ahead to the link of my video at the end of this post):

Bullying and Peer Education

Teaching Moment #1: Friends and Brains

Teaching Moment #2: Toasters and Hairdryers

Teaching Moment #3: The Senses and What Autism Looks Like

After my last “class”, Mrs. Kindergarten Teacher and the whole class shared a very special gift with me that I will never forget. With some help from Mrs. KT, they wrote a story with illustrations about Henry and autism. The words and illustrations are theirs. Henry’s own words and descriptions about himself are his as well.

The photos added at the end are a few I had taken throughout the year. (please note that I do not own the rights to the music used).

Thank you, Mrs. KT and your Lions! ~from the very bottom of my heart!

And finally….

A Very Special Kindergarten Story

Teaching Moment #2: Yep! You guessed it…

Toasters  & Hairdryers!

~But first, I must give full credit to Mom-NOS for sharing her concept and presentation  of a hairdryer kid in a toaster-brained world. Thank you so very much for sharing your brilliance! Truly!

~Also, thanks again to Caffeinated Autism Mom for her help in giving me some pared-down direction to make a presentation of my own using these ideas .

You ladies are amazing!  

Here’s Teaching Moment #1 just in case you missed that.

Now on to Toasters and Hairdryers

This time Mrs. KT started things off with the kids paring up to complete a Venn Diagram. ex:

Another exercise in how they are different and what things they might have in common. She gave them prompts: “draw your favorite food in your part of the circle”  and then “ask your partner what their favorite food is and draw that in their side of the circle”, etc.  After they had each drawn three small pictures of things that were different about them, they concentrated on the center over-lap, finding two things that they both liked. After some discussion about their diagrams it was my turn.

I started by reviewing just a little bit about what we talked about my first visit to the classroom, the book My Friend Has Autism, and the brain hats they made. I told them about how April is Autism Awareness month and about how some people might be putting blue lights on at their house to remind people about autism.  Some of them seemed to think this was pretty cool!

Then I told them it was time for pretend. We were going to pretend that our brains were made up of wires and metal and plastic which got a few giggles from them. Then I said, “Now, what if all these parts of wires and metal and plastic all got together and grew into a….toaster!?!” As I said this I reached into my bag and brought out our toaster. This got a lot of laughs.

“Hey! That’s from our kitchen!” Henry said.  Which brought on even more laughter.

“It IS from our kitchen. This very toaster made Henry’s breakfast this morning. So, what is it that toasters can do so well?”

“Make toast!” many of them said.

“Exactly! And they can make all kinds of toast. What else can they make?”

With this, many hands shot up and I got all kinds of good answers! (Yay! I was getting participation!)

“Waffles!”

“Pop Tarts!”

“Bagels!”

“Toaster Pastries!”

“Whole wheat toast!”

Excellent. Then I moved on to talk about, “Now what if MY wires and metal and plastic grew into a hairdryer?” And I reached in to my bag and brought out a hairdryer.

We talked about how even though toasters and hairdryers were made up of similar things, they were very good at different jobs.

“What if one morning Mrs. KT over-slept and because she didn’t want to be late for school she didn’t have time to eat breakfast. When she gets to the classroom, who could help Mrs. KT?”

“The toasters!”

“Right! But do you think I could also help? Don’t forget I’m a hairdryer.”

“No.” was the most common answer.

“Well, I probably could try to help Mrs. KT but it would be hard and it might take me a really long time, wouldn’t it?”

Henry’s hand shot up about this time. “I want to be a hairdryer, Mom. You be a toaster.” I’m thinking, “Dude you are SOOOOO a hairdryer!”

“Now, what happens on another day when Mrs. KT is running late and she gets to the classroom and remembers that she forgot to dry her hair?!? Who could really help her now?”

“The hairdryers!”

“Yep! But do you think all of you toasters could help dry Mrs. KT’s hair too? Maybe. But it would be hard, wouldn’t it? It would probably take a very long time! Especially since Mrs. KT has such long hair!”

Mrs. KT was nodding in complete agreement! (Side note that Mrs. KT does, in fact, have beautiful long dreadlocks that I adore!)

“So,  sometimes things are easy for us and other things we might have a hard time with that takes us longer. And that is okay, isn’t it? We’re all make up of the same kinds of things but how we are put together lets us be good at different things.”

By this point I could see that I was losing a few of the kids’ attention so it was time to hand out a coloring page that I had printed out of an awareness ribbon made of puzzle pieces that the kids could color. We put a colored picture of the Autism Awareness Ribbon up on the board and we talk just a little about the ribbon and about April being Autism Awareness month and I reminded them watch for houses with blue lights. And then it was time for me to go. Whew!

[This time I give myself a B. I felt much more comfortable with the kids and I had a good time. It made me feel good that I had gotten such good participation and that the kids really did seem interested! I can only hope that some of this information is sinking in! I will be forever grateful to Mrs. KT for giving me this opportunity!]

Teaching Moment: #1 Friends and Brains

I’ve written both here and on my Facebook page about how Henry’s Kindergarten teacher asked me to come into the classroom to talk to the kids a little bit about autism. Yesterday afternoon I had my first visit.

All the children were on the rug and I explained to them that I was there to talk about autism. I asked if anyone had heard that word before and if they knew what it was. I got some “yes” and some “no”.  I asked if anyone had a question before I read a book to them about autism.

My son’s hand shot up.  In my head I’m thinking, “really, dude?

“Yes, Henry. What is your question?”

“I hate G*!”

Of all the kids to be outspoken about not liking kids with differences, it’s MY kid, you know, the one WITH autism, that probably needs the most help in understanding the feelings of others. Which is exactly why we thought it important to have him there in class for my visits. Clearly, we’ve got a lot of work to do with my son. Henry’s teacher quickly diffused the situation by explaining that it is not okay to say things like that and that those words hurt. We then segued into explaining that the story I was going to share not only was about autism but about having a friend that was different.

With 17 pairs of 5 and 6 year-old eyes upon me I began by reading the book, My Friend Has Autism by Amanda Tourville.

Mrs. KT (Kindergarten Teacher) then did an exercise with them demonstrating how sometimes we liked the same things and sometimes we didn’t and that it is okay but we still need to treat each other nicely.

She began by asking a series of questions asking and motioning to the kids to either side of the rug depending on their answers. The questions got harder as she went on but here are just a sample:

“Who likes pizza best stand on this side of the rug and those who like hot dogs best stand on this other side.”

“Who likes to give and get big hugs stand here and those who don’t like to be touched stand over here.”

“Those who like to have a lot of friends come to this sides and those who prefer to have just a few friends go to this other side.”

“Those who think that we should   treat everyone nicely no matter our differences stand on this side of the rug. Those who think it’s okay not to be nice to someone because they are different stand on this other side.”

Importantly, on this last question all of the kids were standing on the “right” side! We talk about how it is important to be kind to one another even if we don’t agree with them or want to be their friend. We don’t have to be friends with everyone but we do need to be kind to everyone.

Next we moved on to talk about how different our brains are. How what we see in our brains can be very different from each other. Then the kids made “brain hats”. Each student was given a sheet of paper with an outline of a brain and they were asked to color in and draw on what they saw inside their brain. Then we attached their picture to a paper band that fit around their head to complete the “hat”.

With that it was time for me to go but Mrs. KT told the class that I would be coming back again to talk more about autism.

Some asked, “Tomorrow?”

Mrs. KT and I laughed and said, “No, not tomorrow but soon.”

[I haven’t yet had a chance to speak with Mrs. KT to get her feedback on the lesson and we haven’t set a date yet for me to come back.  Personally, I think I should have been able to do much better.  I just don’t feel I can relate to kids all that well, especially those that are not my own. They intimidate the heck out of me. But, since Mrs. KT did tell them I would be coming back I guess I did well enough. I’d give myself a C. Usually the more I DO something, the better I get. I’m hoping that is the case here because I’ve been given a WONDERFUL opportunity here and I sure do want to make the most of it!]

Bullying and Peer Education

My little dude is a quirky one and his Kindergarten peers are noticing. They are noticing that he talks out loud to himself. They know he doesn’t like to be touched. We had some issues the first semester with a few of the kids poking and touching him just to get a reaction. Mrs. KT (Kindergarten Teacher) was on top of it and immediately put a stop to it and did some peer education and even brought in the school counselor to talk about bullying and what it means, etc. After that things seemed to be going much smoother.

This semester however, Henry began coming home more agitated about school. When I would ask him about how his day went he would say, “Worse!”

Eventually, over several weeks I was able to get him to talk about what was going on at school. Apparently a few boys were chasing him out on the playground threatening to touch him. I didn’t say anything right away to the school as I was hoping we could work with Henry at home on how he could advocate for himself at school. Also, I did not want to assume that Henry was completely blame-free in this situation because he can sometimes give mixed messages. You know, that whole social/emotional deficit and not picking up on social cues!

But when he continued to come home upset I finally brought it to Mrs. KT’s attention. It turns out she was unaware this was happening outside. We talked and she immediately set to work on reminding the class about bullying. Grant and I had a meeting with her, Henry’s SSD teacher, and the school counselor. Once I brought the issue to their attention they were ON IT. I was impressed. And relieved. It’s so good to know that we’ve got a great team for Henry!

Mrs. KT had suggested a couple of times that she thought it would be a good idea if I come into the class to talk to the kids a little bit about autism and a lot about how we are all different and yet the same. At first, I was excited about the idea and felt good about how great an opportunity Henry’s teachers were giving me! Then I panicked. How could I do this? I’m just a mom, not an educator! I have no idea what I’m doing! I tried to punt this over to the experts at TouchPoint Autism Services but Mrs. KT insisted that she thought it would have much more impact coming from me. I was not getting out of this one.

I immediately went to my Facebook page with this news. The outpouring of support and the generosity of other mommy bloggers sharing their ideas with me and offering to help was amazing! (Thank you, Caffeinated Autism Mom!) I poured over some of my favorite blogs that I knew had written about similar situations in the past. My first stop was Mom-NOS with her now famous Hair-Dryer Kid in a Toaster-Brained World. And I got a lot of suggestions from TouchPoint as well!

I’ve pulled together a very rough outline for three to five 20- minute learning sessions that I will take with me into Henry’s classroom; the first one is to happen next week just after our spring break. I’m nervous. Still, I’m doing this for Henry and all kids on the autism spectrum. This is a wonderful opportunity to promote awareness and acceptance that I cannot turn my back on. These are kids that Henry will be growing up with and going to school with for a long time.

As with the autism itself, the earlier the intervention the better, the same goes for awareness and acceptance, beginning with Henry’s Kindergarten class. The sooner, the better!

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