What? Teachers are People Too?

Today is the last day of Elementary School for my youngest son, Adam.  Both my boys attended this school from K-5th so I've been working with the administration, teachers and staff now for 8 years. It's very hard to say good bye. We have struggled and triumphed within the walls of that school and its hard to imagine anything different.

Today I sent in Thank You letters to the teachers, a lot of them.  There have been so many people who have helped my boys gain their educational foundation, everything else from here on out will lie on top of that sturdy foundation.  They helped me too, without their patience and expertise I would not be as strong an advocate as I am today. I'll tell you, it's hard to express all of that in a card, gift or even a blog post.

Along with this note, I also added the URL for this blog and the Facebook page too. That was sort of a difficult thing for me. If you are a long time reader, you know that I have been angry, hurt, scared and humbled over the years. I've written posts about all of it, some of the darkest days when Cameron was out of control was written about on this page. I worried what the teachers would read, how they would react, would they be mad? 

Then I remembered my goal for this page, I want to be honest about Autism. I want to show the good and the bad. I want to remind everyone that Tomorrow is a New Day, that a bad day is not a bad life, that we are all human deserving respect and care, that overcoming what is in our heads sometimes is the first step is making a difference...

I remember a day when I was about 8, I was at the public pool in Lebanon, Missouri. This is where I spent the majority of my summer, Nintendo wasn't invented yet and AC was a window unit. The pool was the place to be on a hot day. One of my teachers was at the pool with her kids and I just sort of blanked out for a minute. My teacher was a mom?? What? 

In my mind teachers, like doctors, were elevated above simple things like raising a family and keeping house.  They were all knowing and never questioned.  Needless to say, this thought changed that day and has continued to change though out subsequent years. Still, I hold teachers in the highest regard and count many of them as friends.  I cannot imagine being a teacher right now, the expectations of them are so high, the pressure and stress is intense and the demands put upon them are unfair. I will always be on their side for wage increases and additional support and resources in the classroom. More than once in the last few years I have been so frustrated and wanted to yell, "Just let the teachers teach!!!" when the testing days dragged on and on and curriculum spiraled out of control.  

I've been mad, sad and desperate over the years and it has all shown up in some form on one Lunatic Autism Mom page or another. I have always respected the privacy of my son's teachers and never posted anything on these pages about them specifically but I have been mad and scared at specific times and I've used this page as a way to get those feelings out. I hope that this does not turn away the teachers I've invited to this page today. Every event has taught me something, every argument, every scary moment has been another step in our journey. Most days I wish life didn't have to be this hard, that every single thing wouldn't be such a struggle, then I think of where we are now and where we once were... we have come so very very far and we have many teachers to thank for that.  

What? Teachers are People Too?? (pending post)

It's only half written! But it will be done soon so check back, in the meantime... this is soooo Adam!

Decisions... Get The One You Want

Sorry for the long break in between actual blog posts, if you follow along on the Facebook blog page then you already know that I'm up to my neck in Middle School placement stuff. Unfortunately there is no end in sight.

In dealing with all the placement issues I have kept a statement in my head, it is universal and all encompassing and I want to share it with you all.

Decisions are made from data.

Simple, to the point, easy to remember.  I liken it to my every day rule of Behavior is Communication. Not a day goes by during a transition year that I don't remind myself that Decisions are made from data, data has no feelings, data doesn't lie. 

This statement has prompted a change in my placement efforts, it started with my oldests son's placement into a Non-Public School (Kennedy Krieger School) and has been fine tuned into my youngest son's placement this year (to be determined... STILL!). Its a shift in thinking and its not easy but it is EFFECTIVE. Here's some advice:

Start charting every piece of data you have in a spreadsheet. Start in Kindergarten and keep going. You will quickly see what data you are missing and can then ask for it. When you are looking at how your child is progressing in grades, support visits, behavior, whatever, you have it all in on one sheet to quick reference. I have had many spreadsheets over the years but the ones I am working off of currently are Grades, Global Scholar Scores, Goals, and Quarterly Classroom Assessments.  In the past I've also had spreadsheets for Support Room visits per day and Targeted Behaviors. Anything the school keeps data on you have access (request it!) to and you can chart it.  

For this transition year I have created some charts from the spreadsheets so that I can easily show how my child is progressing (upward or downward trend). By adding in the upper and lower bounds of the testing population I could then get a picture of what my child would look like when placed into the general population. A graphic representation is hard to dismiss or ignore when you use the school's own data to show a downward trend of a student falling far below typical peers.  

Here is what I plainly saw and could then plainly present to the IEP team once I gathered all the data. Grades were decreasing. Goals were not being met (and I thought I was on top of that but years were passing and goals were being changed without actually achieving the initial goal! I was shocked at the oversight!). His Global Scholar scores and classroom assessments were flatlining or decreasing. 

THIS changed my entire approach to this transition year and how I approached goals, accommodations and how I worked with the team entirely... Data doesn't lie.

All of that being said, one datapoint is one datapoint. I put no stock in grades at all and even standardized testing isn't all that great either BUT my youngest child is INCLUDED so he is being compared to the "typical" student therefore as long as he is in inclusion, that data is valid. It should be tracked and considered. 

Change the language you use. How you feel and what you wish and what you think are valid and is certainly something you need to keep in mind but when you are trying to work for more speech, an intervention, a placement you will get much further with: The data shows... His current trend... What was observed within the classroom... Your feelings, wishes and thoughts can be contradicted, Data is fact.

Keep going. Most of what has happened this year, most of what I have requested, has been because it never occurred to me that I couldn't.  It never occurred to me that I couldn't contact my son's projected Middle School to request a meeting in October for placement in the next school year.  I met some really lovely and hard working people that flat out told me they didn't think they could meet my child's needs.  Okay then, thanks for your honesty. Lets go to Central Office and ask the people there which schools they think CAN meet his needs and lets visit them too.  It wasn't until very recently (March) that someone told me that this isn't how it was done. At this point I've worked all the way up the school "food chain" and never once has it occurred to me to stop.  I contact the people I think can help and I ask them for help.  I am a life long learner and I'll take any help and advice I can get. 

Work smart. I do not consider myself a Warrior Mom. I do not go into meetings mad or making demands.  It's just the way I work. Other ways work for other people.  I have my data, I have my suggestions and if anyone feels a different way than I do then I will welcome their data and their suggestions.  Since we all have the same data... see where I'm going here? I firmly believe that a team effort is the most effective way to support a student. I am a member of that team, my son is a member of that team, our specialists sometimes will weigh in as a member of the team and the rest of the team is provided by the school. Its never perfect but when it works, it works amazingly.  

I've already written way way more than I expected and now I have to get back to real life.  I will try and figure out a way to put up some spreadsheet ideas or templates that I find helpful.  They are nothing fancy but it's what I can handle.  Also, if you have a spreadsheet that has been working for you and you want to share it, feel free to do so!!!  

Hang in there everyone, we're all in this together.  

Yelling at the Pieces

This week I was given a compliment from a fellow parent, he said that he admired my patience with my boys. I should have said, “thank you” but instead I think I mumbled something about my patience being long fought and hard won. This is true. In the past fellow parents have not been as kind as I was dealing with tantrums and rages and just trying to get though the moment. It has taken me YEARS to have the level of patience I do now but, in no way, shape or form do I have an extended patience level. In all of thirteen years I have amassed a level which can last just 45-60 minutes, max. So yes, that compliment was very nice and has made me feel very good this week. I am just thankful that my younger son's appointment was only 50 minutes long while I waited in the lobby with my older son. That I did not reach my breaking point thus forcing this fellow parent to retract his praise and consider me to be the lunatic that I am the majority of the time.

Fast-forward to today and I am at odds with my own frustration and anger and I want to YELL at the thing that has brought me to this point. I cannot. They say that Autism is like a puzzle and “we'll keep trying until the pieces fit!” but there are other pieces at play in this puzzle that make up the small bodies in front of me. One of our biggest obstacles this year is helping my 10 year old traverse life with his puzzle pieces of Autism, severe ADHD and Anxiety Disorder. Its a balancing act of figuring out which puzzle piece is being played at that moment, taking into consideration the needs of that piece all the while trying to balance out the other pieces at the same time.

I am frustrated with Adam because we attended a Lego event at a busy store. Unbeknownst to me he brought along a small Lego creation of his own along with two transformers all shoved into his pockets. As we were checking out sofas after the event, he started pulling out these small toys with many pieces and parts. With the new lego creation from the event, he now had 4 things in all AND a pair of noise canceling headphones. As soon as I noticed the toys coming out of the pockets I gathered everyone and we headed out of the door, I wasn't very kind about it. My frustration was evident.

Bringing things along is not new and its not uncommon for kids with Anxiety. They need something familiar, something comforting. My own anxiety of leaving things behind and having my son freak out over a lost toy does not play well with Adam's packrat anxiety reduction technique. Once everyone was back in the car we headed out to lunch, my son was happy with his new Lego creation and my frustration level went back to a manageable level until...

We arrive home and I'm unloading the car, its raining and I want to make sure 2 Lego creations and 2 transformers are stuffed back into pockets as well as the library book my oldest brought along with him, my handbag and cell phone and...”where are your headphones?” The last time I noticed them, they were sitting on a table in the furniture section of the department store while I was shoving toys back into the pocket of my youngest's cargo pants. My frustration level went right back to where it was before and then climbed a few levels beyond that. I'm saying things like, “WHY did you bring those toys...” and “YOU KNOW you aren't supposed to...” and “I'M SO FRUSTRATED with you...” And my son got upset, actually both of my sons got upset. My youngest because I was frustrated with him and my oldest because he didn't understand why I was upset and he was afraid he did something wrong.

And I got mad at myself because I wanted to yell so freaking bad!!!! I wanted to get mad and try and get him to understand everything he did wrong and to learn this lesson so that **I** wouldn't get frustrated again. Ummmm... see that there? I, Myself, I, I, I... Wow. Yeah, that was realization #1.

Realization #2 came a few minutes later after I had shut my mouth. Getting angry at a piece of the puzzle is not new to me. I have plenty of “I hate Autism” days, I let myself have that anger and then remember that no matter what I am feeling, the boys difficulties far far outweigh my own. Today was the first time I really really needed to be angry at ADHD, the piece that was forgetful, the piece that left behind the headphones, the piece that can't think beyond the moment and see how much they will be needed 15 minutes, 30 minutes or even a day from now. So I thought, yes, lets be angry at ADHD! So I started in with the “You know...” and “I'm so frustrated...” but I forgot about the anxiety piece.

He got mad, he got sad, he got frustrated as all these pieces took center stage in defense of his choices. As I watched this unfold I realized that I cannot ever get mad at just one piece. They aren't removable or interchangeable, they are always present and together they make up a really awesome (sometimes frustrating)10 year old. I love that whole little person, every piece and part, with my whole heart. Its unrealistic to think that I won't ever get mad or frustrated again but I will now and forever remember that getting mad at just the ADHD makes about as much sense as being mad at the headphones that were left behind.

We all hit the reset button now. The Hubs went back out in the cold rain for the headphones, we all had some quiet time and peace is once again reigning in the household. Lets hope it remains for the rest of the day, the likelihood of which is about as much as the headphones walking home on their own.

Smiles Staring Back at Me

My oldest son with Autism goes to a special school. We fought for this school and it has been an excellent placement for him, he is calmer and happier. Every Wednesday they have early dismissal and I choose to pick him up on those days and save him from his extremely long bus ride (1.5-2 hours). Spending these hours with just him is a special treat for me and I hope one day he will look back and consider them a special treat for himself as well.

Waiting for him today I look over the picture wall in the lobby, as I do every single Wednesday. My son's classmates faces and smiles stare back at me and I smile. I smile every single time. They are learning, challenging themselves and working so hard and they are smiling and I love that so very much.

Sadness sneaks up sometimes. I'm going along the routine and out of nowhere the unfairness of it all hits me.  It occurred to me in a flash that I am seeing faces of kids of all ages, beautiful faces and huge smilies and I'm sad. 

This one is tall and strong, he is the quarterback of the football team. This one is smiling while talking to his classmates, they obviously respect his opinion, he is most certainly the class president. She is standing at the board doing a math problem, she is that beautiful and smart girl who is universally liked. This group of guys makes up the drum line in the marching band, they rock! 

Except none of this is true. 

What makes me so sad is that it could be true! It should be true and I am standing there looking at their faces and wishing so badly that it were true. 

I know this sadness will pass, the "what could be" will pass along with it. I know this is the grief cycle repeating itself once again and once I get through this part, I will get back to acceptance. I look forward to that, with acceptance I also gain strength. I'll be the first one standing next to my beautiful boy saying, "You want to be quarterback? Lets do it!" but for tonight I will think of those faces and those smiles and wish that all their dreams could come true and that they keep smiling along their journey. 

Pre-Back to School... Analyzing

We've been talking about going back to school this week. A lot. My 10 year old's anxiety hit the roof about mid-week and, in contrast, his 12 year old big brother can't wait to go back. It's made for a polarized house of ups and downs and I'm getting motion sickness.

My youngest struggles in school, Autism + ADHD + Anxiety Disorder (NOS) = a very stressful school experience. He struggles the most with Math although other subjects have specific difficulties as well.

We did some chatting specifically about sitting in math class where I tried to get a feel for what his issues are outside of the learning material, should I ask for his seat to be in a specific spot? Does he need a different type of headphones? Would he benefit from a different kind of paper? Pencil? All that kind of stuff. Basically, can I minimize every other issue so that he can focus better on the subject in which he struggles most?

It was then that I realized a big issue, something that was ESSENTIAL to my own understanding of mathematics, something that could make a fundamental difference:

THERE IS NO MATH TEXTBOOK

 I hate to constantly compare my education in the 80s-90s to education today. There was a lot bad about my education and a lot good but from 3rd grade on I always had a textbook. The idea was that the student would read the 3-4 page explanation of the math principle, which included vocabulary and example problems, then the teacher would go over it in class with more examples. Then we would complete some work relating to those problems. If I didn't understand the vocabulary, I could turn back 2 pages and look for the word in bold. If I forgot a step in solving the problem, I could turn back a page and look for an example that was similar to mine. If I took math homework home with me, the book came too. The fact is that I always had a REFERENCE to the material I was supposed to be learning until I was tested on it.

My son has no text book. When I volunteer, I make copies of worksheets, I tear pages out of workbooks but I've never seen a math book (spelling book, social studies book, language arts book...etc) on/in/near his desk.

This makes me wonder about the progression of education, I get that curriculum is different now and teaching is vastly different than my experience but at what point did books become obsolete? Where are the references and the examples that would help the vast number of visual learners like me and like my kids. Being able to see a page in a text book again and again, allowing a visual learner to take a mental "snapshot" of what is on that page is kinda key to someone who thinks in pictures and/or is a visual learner. You cannot do this with a white board or a computer screen unless you are willing to flash the exact same (to the detail) picture/explanation every time it needs to be referenced by every child. I can remember being in the 5th grade and closing my eyes during a test so that I could picture the page of a long division example, I could even remember the page number. I would have failed that test without that picture in my head.

In considering this issue, I attempted to look at it from the school's perspective as well.  Books are expensive, I get that, I'm a book lover from way way back.  I also hear from teachers that there is a paper shortage. That they are allowed ONE case of paper per school year. Should they require more, they either have to hope a parent donates some or buy it themselves. I'm not at all surprised at the paper shortage when I'm volunteering and making 30 copies of 10 worksheets per week just for math lessons.

The steps to solving a math problem out of a text book:
pull out lined paper
open text book
read instructions
copy problem
solve
repeat
(**no copy paper required, lined paper is cheaper, books are a reusable resource**)

There were a lot of things wrong with the education of the 80s and 90s, access books and reference materials to every student was not one of them. I'm not going to lie, I'm kinda pissed about this. There are many changes to today's education that is in direct contrast to my sons' learning styles and I'm starting to think that the worst of them all is something that should be the easiest to provide. Technology is great, no doubt, but arguably the greatest invention of all time, the invention that spread the most information ever through out the entire world and through out time was the printing press.

Things That Make Him Happy: Ravens Football

Football. He loves football and the Baltimore Ravens in particular. His interest in football has been something wonderful for him and for our family. Football an "acceptable obsession" he can go to restaurants with the game on the big screen and can cheer along with a crowd, he gets high fives from strangers and he can cheer his favorite team to victory with everyone else. It can be magical.

Over the last 5 years there have been many many teachable moments about yelling at home and in public, keeping calm during tough wins and far more conversations about certain commercials played during breaks than I would like (beer and boner pills are fun to explain). We look forward to the season and proudly wear our purple and black and every year I put together Cameron's NFL game book.

In the game book, every match up is listed and we spend a good amount of time during the week making our "picks". If you visit us during the season you better be prepared to make yours as well and don't worry, Cam will write it all down so your win or loss is forever notated.

Last year we stepped it up and started a small fantasy football league with friends and family. His ability to pick winners is awesome and The Hubs had to work pretty hard to squeak out a win in the league.  This year is my year though, I can just feel it! With a team name like Fighting Fluffypants how could I lose??

All of this is on my mind today because it's the first preseason game for the Ravens, Cameron's binder is ready to go and we are going to the game!!! So short blog today because we've got to get to M&T Bank Stadium to cheer on our team. 

**This is hopefully going to be a re-occuring topic, I would like to share "things that make him happy" and "things that make my life easier" in short but fun blog posts. Who knows, maybe we'll stumble across something that makes your life easier or something that makes you happy as well!!**