parenting, Uncategorized

New (School) Year, New Letter to the Teacher…

Friday, August 19, 2016

Dear Team,

I’m excited to get to know and work with you all this year.  I want to take this opportunity to fill you in a little bit about Big and our family.  I’m sure most of you already know Big, but there are lots of things an IEP just can’t tell you about him. First, he is a kind, loving, smart, creative and amazing boy who happens to have Autism, Anxiety and ADHD. He IS medicated; however, as we begin the new school year and undergo some changes at home, it may take him some time to find his groove at school. My husband HUBS and I expect for Big to be challenged and to behave at school.  Like my dad has to remind me: “Even good transitions are stressful.”

Often, one of the hardest things to determine is whether a behavior is “autism/anxiety/ADHD” or just a nearly twelve-year-old boy. When Big feels anxious, his behavior can deteriorate rapidly.  He has learned lots of coping mechanisms, some good, some not-so-good. Mrs. XXX and Big have worked for five years on social skills and knowing how to react in a given situation. Big knows the ways things should happen, but in the moment has difficulty putting his knowledge to action. Like many on the spectrum, anxiety can show itself as stimming (for Big, it can be a vocal stimm such as squawking or having to repeat the beginning of a phrase multiple times before being able to complete, or needing to repeat a phrase or question over and over). Other stimms Big exhibits are, finger flicking, pinching his forearms (not hard), and nose picking. That last one is one we’ve been working on forever…and may be the one I’m most easily frustrated by. Another way to tell when Big’s anxiety is peaking is when he becomes less flexible in his thinking. Many of you saw an example of this at meet the teacher when because we had sorted the supplies by class, Big couldn’t handle not delivering the materials as he planned. When he has “met his limit” (especially on group projects), he can become especially rigid. Big has come a long way in becoming his own advocate; he will often ask for time away from the class to get it together, or to draw or another soothing activity. He’s gotten really good at avoiding meltdowns and heading them off on his own. He does sometimes need the verbal cues “breathe” and “rational thoughts.” We do not force eye contact with Big. Usually, we ask for initial eye contact and then he’s free to look wherever he needs to.  Occasionally, we give the verbal cue “eyes” to remind him. I have to remind myself that he can either look at me or listen to me but rarely both.

As well as Autism, Anxiety and ADHD, Big has auditory processing disorder. This will lead to situations where he asks you a question after you’ve already given instructions. It’s hard, sometimes, to determine if this is an aspect of ADHD (not listening) or the APD. At home, I usually ask him to repeat back to me what I’ve already stated. Most of the time, he can, and then the information clicks. If he cannot either legitimately recall, or just needs to hear again, I will repeat.

Big’s two biggest challenges academically, in my opinion, are organization and handwriting. I know that most sixth graders can remember to turn in their papers, etc. I can promise that IF by the time Big gets home from school he remembers an assignment and it’s in his folder, we will make sure it is complete. If there is a missing assignment 9 out of 10 times, it is in his folder.  IF there is ever a time that he is missing assignments, I ask that before you send him to the homework table, you ask him directly (IE not the whole class…he might not remember because of the APD) and consider helping him look in his backpack or shoot me a text.  Something small such as homework table can ruin his whole week.

I am going to work exceptionally hard at giving Big the room to grow even more this year. In order to do this, I have to know that we are all a team. I don’t have to be told about every minor hiccup in his day, but if major things (such as a meltdown) happen, I ask that you let me know.  I’m a BIG believer in communication. If you ever have questions or concerns, I have my cell phone on me at all times. My number is xxx-xxx-xxxx and my email is austisminourhouse@gmail.com Hubs is also often available.  He may not answer immediately but his number is xxx-xxx-xxxx and his email is blahblahblah@gmail.com  You should know, that should we (parent/teacher) ever have a situation where we may not see eye to eye, Big will NOT know this. We strive to let him know that this is a working relationship we value.

WhenBig has a meltdown, it is important to know several things:

  • Don’t touch him unless it is for his own safety. (In general, Big does not like light touches. If you ever want to hug or touch him, firm is best.)
  • Don’t try to talk him out of a meltdown.
    • Instead, remind him to breathe.
    • Remind him that when he is calm he is smart.
  • PLEASE don’t let him meltdown in front of the whole class.
    • Offer a walk to get a drink.
    • Offer a soothing activity such as a piece of clay, drawing or just sitting for few minutes.

I promise, Big and you will learn so much from each other this year.  I am so excited to see how far he will come. The second page below contains his schedule and then a list of each of the people on our team this year along with their ISD email address.

Thanks,

Kristi

CLASS SCHEDULE

CLASS                         ROOM TEACHER                   TEACHER E-MAIL

  1. CLASS                     123       TEACHER                     TEACHEREMAIL@SCHOOL
  2. CLASS                     123        TEACHER                    TEACHEREMAIL@SCHOOL
  3. CLASS                     123       TEACHER                     TEACHEREMAIL@SCHOOL
  4.        …
  5. …             

OTHER IMPORTANT TEAM MEMBERS:                    EMAIL

On Campus                                                      

PRINCIPAL X                                                                  EMAILADDRESS@SCHOOLEMAILNAME

Off Campus              

NAME XXX                  LSSP                                        EMAILADDRESS@SCHOOLEMAIL.COM

(NOTE: I included every member of our team: every teacher, the principal, speech, OT, School Psych, etc.)

A  Big Fat PS to you, my lovely blog readers, I’m anxious about this transition. Like SUPER, DUPER anxious. But, you know what? It helps knowing you’re not alone. It helps knowing that you have friends:  real-life, on-line, imaginary and otherwise holding your hand or your hair as you feel the wave of nausea.  Love you all oodles. 

 

 

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Embarrassment is Growth?

Yesterday was a rough day. Big failed to turn in a homework assignment and had to sit at the “homework” table during lunch. The way this table works is the kids that file through the cafeteria at lunch see their names on the table and know they have to sit there and finish whatever missing assignments they have instead of sitting with friends and having recess. I don’t want to discuss the pros and cons of homework and the table at all; I don’t want to discuss taking away a kids’ recess or punishing for things that may or may not be out of his control. I don’t want to discuss his IEP and what should be added to prevent future incidences. Maybe I do, but not today.

Big doesn’t go into the cafeteria daily; he heads out to the patio to eat with a group of friends. Yes, you read that right. Friends! He didn’t see his name on the homework table list, so someone had to come out and get him. You can imagine how well that went. I don’t have to; I have spies everywhere. He had a major meltdown. Major. He has been on a really good streak this semester and has shown huge growth in his ability to deal and cope in a more age appropriate manner. Notice, here, I say more age appropriate. He’s still a kid on the spectrum, after all. He was a.) in the cafeteria 2.) missing his recess 3.) didn’t understand what assignment was missing f.) thought he was going to miss a weeks worth of recess, and finally he was “totally humiliated, mom.”

Let that sink in. My autistic child felt humiliation. Initially, I was frustrated, frazzled and fangry. Who in the world wants their kid to feel humiliated? No one, right? But, just now, I was on the phone with my mother-in-law debriefing her on the week since she last saw the boys (Sunday); I was telling her about Big’s day yesterday and I had what Oprah likes to call an a-ha! moment!  This is huge! This is growth! This is what we work so hard for. Stick with me; I see your confused looks. No, I don’t want my kid to feel embarrassed and humiliated. But he did. He felt it. Do you see what this means? The years of talking about how we make other people feel, the years of reminding him to think about the people around him in the moment and their experience in the world, and countless conversations about how we look to others…that talking, the work it’s working. As little as a year ago, he would have had a meltdown about missing recess and all the other reasons he listed, but he wouldn’t have felt embarrassed in the least. He wouldn’t have cared what other people thought of him. Yesterday, he cared. Don’t get me wrong; I don’t want my fabulous boy walking through this life thinking solely about what people think of him. I want him to take that with a grain of salt, which I totally think he’ll get to the middle ground one day.

Yesterday, he felt.  Truly, felt.  Today, I see growth.

2_2_blog

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Handing Him Over

It doesn’t matter how many times I do it, it never gets easier. For the record, it’s been more than ten times that I’ve handed my baby over to a surgeon. Every time, my eyes fill with tears. Every time, my heart breaks open. Every time, my mind races. Every time.

The first time I handed my beautiful boy over to a surgeon was perhaps the hardest and most dreaded experience of my life. It was going to change him. Not just in the “he’ll feel better way.” In the very real way of every time I looked at him, he was going to be different. I’d grown fond of his little smile. He was beautiful and whole just the way he was. He was perfect. Because he was only four months old, he was one of the first scheduled that cold, January day in 2005. He couldn’t have his bottle that morning and had never been able to use a pacifier to soothe. We drove to Austin, me in the back seat with our boy singing “The ants go marching one by one…” and Daddy driving. We got our wrist bands; I signed forms. They put one on his tiny little pink wrist. I wanted so badly to cut it off and take him away from that surgical waiting area. But, I resisted. Because I knew this is what has to be done. The wait was both an eternity and a split second. As surgeons, anesthesiologists and nurses came and asked the same questions, I teared up. I signed more forms, never reading about the “what could go wrongs.” Then, the moment came.  A nurse in her cartoonish scrubs, took my tiny boy from my really firm hold. She cooed and sang and walked through the double doors. I think I sank to the floor in tears. The rest is a blur. Two days in the hospital, syringe feedings, no-nos. I mistakenly wore a white t-shirt. I remember that. I remember the tiny crib with metal bars when all I wanted was to crawl in there with him. I remember rocking him in the rocking chair and vowing I would never do this to him again. But, I have. Nine more times.

The years where he was aware of what was happening but before he understood were the hardest. The meltdowns, panic and pleas of help were too much to bear. But here we are eleven years later. Guess what? It doesn’t get easier to hand him over, but it is more bearable. I have less panic because he understands the why. With his last surgery on Friday, he had his turbinates reduced in an effort to postpone a more major septoplasty. He rocked it. He didn’t cry, he didn’t plead for them not to take him, he didn’t even need the versed (aka goofy juice). He woke with out pulling out his IV. During previous experiences, he’s woken screaming (before they bring your child to you, they go to a recovery area) and pulling out anything that may be attached to him. I may or may not have gone into a restricted area when I heard him yelling and terrified. But that DIDN’T happen this time.

We still have surgeries in our future: Jaw Distraction, septoplasty (maybe) and anything else that creeps up between now and when he’s an adult. But, there’s one thing I know, my boy is a survivor. My boy is strong. My boy will handle it, like a boss. Me? I’ll be over there in the waiting room, being inappropriately silly with my husband in an effort not to curl up in a ball. But, make no mistake, even though I’m laughing, part of my heart and soul will be in another room surrounded by machines and anesthesiologists and surgeons and nurses. Another part of my heart and soul will be cared for by people who are not me. I will be over there in the surgical waiting room, with tears in my eyes, counting the minutes until my baby is back in my arms.

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Changing My Ways (of Thinking)

I think I’ve told you. We take a mindfulness and yoga class for kids on the spectrum and their families on Thursday nights. It’s this really cool thing we are doing with one of my favorite people in this world. Part of this process is me seeing what is and isn’t working in our daily lives.

A few weeks ago, I had a few moments with my friend where we were able to talk and sort and work things out; what’s that old saying?  “Two heads are better than one.” I had a realization, an “A-ha!” moment if you will. I often say things like “Big can’t” or “Big won’t” or “Big can’t be expected to…” (fill in the blank with some area that’s a challenge for Big.”  Well, I say “No. More.” No more limiting Big because of things that are hard or make him uncomfortable or make parenting him more work. No. More.

One of my most common “Big Can’t” phrases was “Big can’t go without his iPod.” As if some sort of cruel twist of fate, we had to ground the WeeOne from all electronics for two weeks.  It didn’t really seem fair to let Big spend those precious mind numbing moments in front of youtube and tell WeeOne “no soup for you!” So, we limited iPod to 15 minutes when Big got home from school to decompress. You would be amazed at what happened.  My kids remembered they are kids.  The remembered how to play with toys, create with clay, paint, tell stories, be engaged. Oh, the engagement. At times, it would certainly be easier to say, go do your iPod and give me some peace and quiet.  But, I’m resisting the urge.

Another area I tend to give Big the easy way out is school.  “Big can’t be expected to…write on topics he doesn’t prefer, take notes, eat in the cafeteria and on and on and on.”  But the truth is, every time I limit him by saying he can’t or he can’t be expected to do something, I deny him the chance to grow and change.  He CAN write on topics he doesn’t like; he might not WANT to, he might not LIKE it, it might not be PLEASANT for anyone involved, but he certainly CAN. In the school world, I’m changing my ways (of thinking) from he can’t to “it’s a challenge for him to” because, it IS a challenge for him to do these things.

Years ago, we were in therapy for food aversions. Big didn’t eat. For days and days and days at a time. I remember thinking, there is absolutely no way he will ever eat what we eat at dinner. Through persistence, and years of trying and trying again, this summer we’ve reached a major milestone. Big (and now the WeeOne) will sit down, and eat what I put in front of him without a meltdown, tears (mine) or it taking hours to eat. It feels like a miracle. But it’s not. It was a slow, painstaking process of changing my mindset and his from can’t to can and more importantly WILL.

The other day, I got a figurative punch in the stomach. One of Big’s go to people isn’t going to be available next year at school. I was so upset, crying, knot in my stomach and gave myself a migraine from the worry. My first thought was “Big can’t transition to this new school without this person.  There’s no way. He’s already apprehensive and full of anxiety and fear, there’s no way he can do this.” It’s such an easy thing to fall back into those patterns of excuses. We want to shield our children from the hurt and pain of the world as much as possible, but that’s not real life. Real life is messy and hard and so, so worth it. As I was talking to my dad, like I always do when I’m worried, he said “One thing is for sure:  Big is a survivor.” It’s true, the things I’ve always excused away, may be challenges for big, but he will power through them.  And by powering through, with stumbles and falls, he will grow and learn and become a better human being for them.

Ultimately, I never want to teach my sons that it’s okay to not do something simply because it is hard.  The hard stuff is how we gain insight, experience, empathy, love. Big is going to have a life full of hard things, things that feel like there’s no way he can accomplish them.  I want to give him the gift of knowing that he can and WILL.

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That Thing I Hold On To

I’ve been holding on to this little thing for a while now. I pull it out of my pocket for when I need a happy thought, a glimmer of hope, a silver lining. Today is one of the days I need it.

You may know I walk my kids in to school on the days I don’t have work. In this time of drop off and pick up lines, little face to face time with teachers is available. On these days, I find the people I want to say thank you to, or the ones I need to go over concerns with. One morning, I stopped as I almost always do to chat with my friend who happens to be Big’s school psychologist. As we were talking, another teacher came in.

You see, theres a group of kids who are taught life skills instead of being in a “typical” classroom. Big loves this class. He will often go in there when it’s a testing day. At first I thought it was that he didn’t see the differences between himself and those kids. That made my heart happy.  But the truth is, he DOES see the differences. But here’s the part I’m keeping in my pocket:  he doesn’t pity them. He gets it. My kid on the autism spectrum gets it. He isn’t their friend because he feels sorry for them. He genuinely likes what they all bring to the table. And do you know what happens as a result, they all genuinely like him. They think he’s a rockstar of knowledge. The life skills teacher said, “Kristi, when he comes in with a some tidbit of knowledge and is so excited to teach them something, they sit on the edge of their seats and hang on every word of wisdom he has for them.”

Every kid deserves a real friend, to not be pitied, to be made to feel like a rockstar. Every kid.