Like ice cold feet on the coldest day suddenly coming back to life tucked deep under the covers, today brought me back to life. I was in a funk all weekend long. My sleep, irregular and jagged. My head pounded from thought and my heart was heavy. On Friday we had an IEP Meeting for Grey. Only my 4th ever, so I'm still a rookie. The Individualized Educational Plan (IEP) is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary school receives specialized instruction and related services. Basically- the teacher, the school professionals that work with the child, and the parents come up with a plan to ensure a child is being taught in the best way that child learns.
I foggily walked to my car after our IEP, grateful for the sunglasses that hid my tears. Tears that were frequent all weekend. The details of the meeting aren't important or appropriate to share in this format, but I left that meeting feeling like Michael, Grey, and I were floating on a tiny leaky boat to nowhere. Our GPS had fallen over, and our paddles had shattered into pieces. How are we to get to where we need to go, when we don't have what we need?
Many of you have been here with us for years, and you know my heart. I would never ask for expensive resources or make unreasonable demands. I also don't give a rat's ass about his specific developmental delays. Sure, when I see words like "Severe" under speech delay- and read pages of stuff that he should be able to do based on his age but can't- it feels like I can't breath for a second, but really- those aren't the things that get me.
We actually need to know all that stuff, simply so we know what needs work, and what is working. What I want from the meeting is for people to listen, share, pay attention, have a passion for teaching and are kind. Not having that is what guts me. All I wanted was a picture schedule for Grey to follow at school so he knows what to expect from his day. One like we successfully use at home. I am more than happy to make it. But suddenly I find myself in this meeting debating someone who is not an expert in autism on WHY a picture schedule is important. Defending its positive influence on our life. I felt like I was in bizarre-o world.
The greatest Teachers in the autism community are the ones that will try ANYTHING. They say things like, If I shoot marshmallows out of my nose, there's a possibility he will speak or understand this lesson? BRING ME THE MARSHMALLOWS. Autism is more confusing than binary code. What must be flipped up for one, may need to be down for another. If red is the winner here, it could create tragic chaos there. There is no one size fits all. But there is one thing that all teachers experienced in autism agree on, pictures are nonnegotiable.
I'm just scared because 90% of our school experience over the past 3 1/2 years makes me think that nothing is as important as sports, activities, testing and general education. Who will teach my son in the way that he learns?
Temple Grandin is an American professor of animal science at Colorado State University, a best-selling author, and an autism expert. She is often seen as the leading autism expert because she has autism, and she didn't speak until she was four years old.
Grandin explains he way of thinking and how it is different than most people without autism, It's sensory based thinking, thinking in pictures, thinking in smells, thinking in touches. It's putting these sensory based memories into categories.
I don't understand what kind of person will argue over things huge and important to my son, and completely inconsequential to their life? One that will never shoot marshmallows out of their nose, that's for sure. But most importantly, one that doesn't understand anything about autism. It scares me that you can work with children with autism, and not know what is important to the child, and not care what is important to their parents.
Children with autism often have difficulty focusing on tasks, adapting to changes in routine, and expressing themselves in an effective manner. Pictures may help them improve their communication by providing a visual image for their feelings, thoughts, wants, or needs. When a child uses, or is shown, pictures of routines/schedules, transitions may be easier since the child can see what is happening now and what comes next. Overall, using pictures for communication can help increase a child’s memory skills,understanding of the world, and social communication abilities.
I can't imagine not being able to speak. To be old enough to want and need to know what's going on- but unable to express that kind of thought. Unable to process it by my simply telling him, "Today we go to school. Then I'll pick you up early to go to Speech. After that we come home. Remember, Dad won't be here- he's out of town."
He can't process all of that at once. He won't remember, and five minutes later he will tell me- I want Dad because he doesn't have the comprehension or ability to say, Where is Dad? I want him to be home. I don't like it when he's gone. Where does he go? You say he's at work. What does work mean?
And then later we will pull into the driveway and he will see Dad's car missing and he will start screaming so loud I think he is hurt at first, while he repeatedly kicks the back of the seat in front of him. That kind of uncertainty creates an anxiety so big you can touch it. There are times Grey will just start SCREAMING when something sets him off...He has a build up of not knowing what day it is, or where he is going or what's going on. He can ask for his favorite foods (thank God) but he can not ask questions to make sense of the world like typical 6 year olds can. As he grows older his skills grow, but so does his need to know more, so we just can't keep up. Change is especially hard for people with autism, and change is unavoidable.
Temple Grandin said, Language just gradually came in, one or two stressed words a time. Before then, I would just scream. I couldn't talk. I couldn't get my words out. So the only way I could tell someone what I wanted was to scream. If I didn't want to wear a hat, the only way I knew to communicate was screaming and throwing it on the floor.
I see that in both my boys daily. Frequent screaming, throughout the entire day. I don't want them to feel like that, and if I can lesson that frustration 1% by using pictures, than we will use pictures. We will get our picture schedule. I will make sure of that. But I'm sad it has to feel like this and look like this, because really, this is just the beginning of his school adventure.
Some scenes from the past few days...
Lining up cars + a glazed donut= his donut fantasy
While we were playing, we saw these flowers spilling out from under a fence, and simply had to get a closer look.
We want to share some Spring with our cold weather friends. It's coming soon- I promise.
Exploring downtown Clovis, a neighboring city in Fresno.
A special gymnastics outing with Dad on a much needed day off from school.
Fun in a friend's backyard.
My boys needs pictures in their lives, and so do I. My pictures remind me how lucky I am to have this beautiful life. I often forget to remember that- and then I look through my pictures and I'm overwhelmed with gratitude. Perhaps we should all think in pictures more.
wow, that last picture of Greyson took my breath away! He looks so handsome and grown up.ReplyDelete
My heart broke for you reading about your IEP meeting. It shouldn't have to be that way. I'm an SLP and my old school used to function the way you just described... overwhelmed and understaffed and with the attitude that we know best (which was why I left...). I cringe when I think about that. Was the principal at this meeting? Greyson is lucky to have such a fighter of a mom, I know you will find a way to make this right. I admire your strength.
Chrissy, every day I look forward to seeing your amazing photography and, more importantly, learning something new from your words and pictures of your beautiful children. You are an amazing advocate for them, and everyone who follows your blog is learning from your experience. I doubt if there is anyone out here whose life is untouched by autism--if not our children then our friends and family or their children. I know you will persist Chrissy, and we will all benefit from your strength and love for your family.ReplyDelete
Thank you so much, Chrissy, for sharing your heart with us. Your words and photographs are true inspirations to me as I parent throughout my day. I am so sorry about your meeting. I want you to attend meetings and feel like you're all part of a team--Team Greyson! I wonder if talking to some of your trusted resources will help you find a school system with a team that better meets Greyson's needs. Even if it means another move. You deserve better than this, as do your boys. You should not have to fight for a picture schedule. You are such a smart mother with amazing instinct and endless love. I pray for at least one specialist who will help guide you in the right direction as far as finding an environment that is unequivocally Team Greyson!ReplyDelete
What the heck? Arguing over a picture schedule! Lets take their daily calendar away and see how they function!!!!!ReplyDelete
What a GREAT point!!!!Delete
As a public school SLP, it seems like a bizarre disagreement to have for a child on the spectrum. Of course he needs a picture schedule! And so do 90% of other kids NOT on the spectrum. I'm so sorry for your heartache over something so simple! Please know that most of us special Ed folks would do anything to help our kiddos learn and grow.ReplyDelete
Special Ed is a calling. A vocation. So much more than a job. For every one bad seed, there are a million blooming trees like you. I can FEEL that you would do anything, as would so many other blooming trees. And thank you for that.Delete
I'm soaking up the beautiful sunshine from your photos. The flowers are lovely as I look around at pile after pile of snow. Your pictures are soooo wonderful.ReplyDelete
From a mom point of view, I cried after so many IEP meetings for my son who had a learning disability. From an elementary principal point of view I am in disbelief. Really, a debate over a picture schedule? I'm sad that you had to spend so much emotional energy explaining something that should have been a non-issue. Keeping being a strong advocate for you boys!
What incredibly beautiful pictures - thank you for your inspiring writing.ReplyDelete
I'm so sorry that you were treated that way! I work as an instructional assistant in an ALE classroom. Many different disabilities with many different needs. We do anything possible to make their learning environment the best it can be. If a picture schedule will benefit a child even a little bit, why wouldn't they want to at least try it! So sad that they fight you on that!ReplyDelete
Ugh, IEP meetings are TOUGH. I spent half of one meeting discussing why my son didn't take a pencil to class ONE TIME. I was half mad at myself for not nipping that in the bud right away. You are right, the other person is wrong. The whole point of the IEP is to provide a program designed to meet that specific person's needs! Hugs!ReplyDelete
I am so glad I found your blog today. I totally get what you are going through. My grandson, Sam, is also six years old and in his first year of Kindergarten. Before school started, we researched the surrounding districts in our area and found that there were far too few public schools that could adequately address his needs. There just are not enough teachers, aides or administrators properly trained. So my daughter decided to stay put and fight the good fight.
When the IEP meeting took place, my daughter, along with an advocate who accompanied her, had to fight for what she was entitled to. After many weeks of back and forth communication, she was able to get what Sam needed. Her school district is not huge so this may have had an influence on their ability to implement an effective program. In any case, they gave Sam their most experienced teachers and support staff, and basically built a program for him. He was even given an aide with a BCBA. Next year may be different. We don't know. So, my daughter (who barely has time to brush her teeth) is contemplating running for the board in order to permanently effect change.
I realize every school district is different, as are the needs of all of our special kids; that's why it is necessary to keep up the pressure. It's great that IDEA exists, but it only guarantees an "appropriate" education, not the "best" education - so we have guarantee what they won't.
By the way, your children are beautiful - I love the photos - I know you are a fighter. Good luck - I'll keep reading -
What beautiful photos...keep fighting for what you know is right, what you know works...ReplyDelete
I love the pic of parker's feet from below on the swing. Also the one of Parker in the flowers... so beautiful. Can't wait for spring in Michigan.ReplyDelete
You are an awesome mom, my son Lucas 8 yrs old twin with his sister , make me crazy some times because he is asperger and he never give up, wish is good for his future but bad for my migranes :) sorry if you found grammar errors, i used english as a second language, would you like to write something about the best towns in different cities to leave with Autism kids. I'm desperate for my husband be relocate for a better city for IEP. thank you for your words, those inspiring me very much.ReplyDelete
if the kid is not having progress, 3 months after the meeting, ask for an interim IEP and you take to the meeting the schedule with pictures you want for him, also make sure to have a direct contact with the County, do not be afraid that school look at you as a pain, your kids are more important that anything . do not forget send an opinion letter to the ESE Department after you complete your annual IEP.ReplyDelete