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. 

 

 

Advertisements
Uncategorized

Watching Him Sleep

Do you remember when you brought your babies home? And you were so in love, you would lay for hours next to them, their bassinet tucked as closely to your side of the bed as possible, and suddenly realize you weren’t sleeping even though you really should be. But you just couldn’t quit watching. Their little breaths so calming and soothing to your soul. And, it somehow felt like if you didn’t watch them during this magical time and you fell asleep, you’d wake up and none of it would be real. 

My boys are eleven and nine now. It’s pretty rare than anyone is sleeping with us unless they are sick. Or anxious. Or scared. And those times, while still precious to my mamas heart, end with the shoving back and forth across the bed and wondering how one so small can take up so much room and put off so much heat. A grownup always ends up on the couch and the child splayed across an entire king size bed. These moments are sweet and are fodder for parental bonding the next morning. “I know! How could his feet be in my kidneys while his legs were across your neck?”

But, now is the time of summer. The boys and I start to have sleep overs at PopPop and Nana’s house and the three of us climb into the queen size bed that still seems unfamiliar to them. It’s the time of summer, when I realize when they strip down to their boxers and athletic shorts how long they’ve gotten this year, how lean. Their tans from hours of playing outside and swimming are coming back. Their hair will soon be a half shade lighter from hours of swimming. They are already a half a year older.

They don’t need me for much these days. They can fix a rudimentary meal of cold cereal and chocolate milk, or a grilled cheese from the toaster. They play with each other, rely on each other more and more. Less on me for their every need. This is what we work toward as mamas. It’s silmultaneously exhilarating and excruciating. 

I don’t take photographs like I should. My husband tends to always have the camera, and I take selfies with the boys. I’m almost always tempted to delete them, but I don’t. Somedays, I sit down to work at the computer and am blindsided by the scrolling photo album of our life. Hubs and I being young, carefree and childless. Then, Baby One. Two years later Baby Two. Now? They are nine and a half and eleven and a half. They will be in fourth and sixth grades. It’s hitting me hard. That. Sixth Grade. My first born isn’t a baby anymore. His days of coming to my room are going to be fewer and fewer. 

So when they argued over who got to sleep next to me last night, I pretended to fuss at them and let Big win. My first born. He’s better to sleep next to, anyway. But I couldn’t sleep. It wasn’t that his hand was pressed so firmly on mine, as if holding on. It wasn’t that his knee was creating a bruise, although it surely was. It was his breathing. His hair. His nose. His perfect face with its smattering of freckles across his nose. I don’t know if it was a streetlight or moonlight creating a soft glow over him. I couldn’t look away. I couldn’t close my eyes for fear that when I woke up, he would be grown. 

Uncategorized

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

Uncategorized

My Kids Will Never

Before I had children, I used to play this game where I silently (or not) judged other people’s parenting skills. I would say to myself, my kids will never. Little did I know…here’s a list of five ways I was a big fat liar pants.

1.) My kids will never whine at the store.   This one is fresh in my memory because we went as a family to Costco yesterday. On a Saturday. Two weeks before Christmas. Approximately 1/2 way through getting our goods, it became to much to ask of my eleven and nine year old sons to walk and act like humans. The whining. Oh the whining. If Costco wasn’t an hour from our house and I didn’t really need those giant bags of Ruta Maya organic coffee and the huge canister of Starbucks hot chocolate, I would have totally parked the cart and left the store when the oldest loudly proclaimed he felt himself “coming down with something horrible like strep or the flu.” Side note, all symptoms resolved once in the car.

2.) My kids will NEVER have video games. I really and truly believed this one. I made it my whole life with out an Atari or Nintendo. I didn’t want video games. One year big was due for surgery right at Christmas and guess what Santa brought. A PlayStation. Now I spend  3/4 of my parenting time in negotiations about electronic devices. 

3.) My kids will never run around all day in their underwear. I laugh and laugh and laugh at this one. I had visions of my future children with their combed and styled hair, dressed all trendy. Fact is, first thing they do when they come in is strip. Even when it’s cold. I’m lucky to get a brush through their hair on school days and with the WeeOne, all that does is make his hair angry. As far as being “trendy” yeah. If I let them pick out their clothes, they would have that hobo-hippie-what’s happening here vibe. 

4.) My children will never go without a bath. Speaking of hobos: there are times, especially in the summer when the pool is functional, that I honestly can’t remember when they last washed themselves. When they were little bath time was part of our routine, they would play in the tub for endless amounts of time. Now, when someone gets funky, I know I’ve forgotten to send them in for too many days.

5.) My kids will never have French fries for dinner or cookies for breakfast. Ever. Uhm, twelve years ago Kristi, yea they will. And on those days you’ll think to yourself, “At least they ate something. You’re totally winning this.”

  

Uncategorized

Confession

I have a confession for y’all. I feel guilty about my sons diagnosis. There. It’s out there. Let’s let that sink in a moment.

My son faces struggles everyday that I don’t know about. He manages really well to hold himself together most of the time. I’m in awe of the gains he’s made over the past few years. There was a time that the meltdowns were daily and could last the whole day. These days, the meltdowns have weakened in both intensity and duration. That statement feels like I’m bragging or boasting. You see, I have friends whose kids meltdowns haven’t weakened, they have gotten more intense. Big Brudder is hyper verbal. Always has been. Again. It feels like a brag. In fact, in his younger years it was somewhat a party trick. “Here Big Brudder, tell them everything you know about plants or dinosaurs or trains. Show them you can read this giant text book.” I am proud of how smart Big Brudder is. I’m equally proud of the Wee One’s intelligence. At the same time, I feel like something of a fraud with my Autsim Awareness bumper sticker, my Autism In Our House Facebook page and website.

It sometimes feels as if it’s an injustice to those who struggle in a more profound way. I’m in no way diminishing my sons struggles, or my own as his mother. It’s a hard walk, yet it is one I wouldn’t change. But my son cancommunicate. My son can be his own best advocate.

So, irony. Just hit me. Like a ton of bricks. As I was typing this out, I got a call from the boys writing teacher. He is refusing to work. Refusing to cooperate. Crying. Nearing meltdown. I can feelit. And I’m an hour and a half away. An hour and a half.. I feel helpless. He is the only one right now who can help himself. I am not in control of this situation. I’m not in control of the future either. Hell, I’m not in control of the next five minutes. Is that ALL parents common bond? Giving up the control? You let me know when you figure it out. Deal?

IMG_0966.JPG