I Love You Because...

Sometimes I hate Autism.... but mostly I don't.

****just a warning, don't click on the following links if you feel like criticizing my parenting or my my son, I re-read my situation or watch the video clips of him struggling and I break down into tears- and not because I'm pregnant but because it's heartbreaking to see him hurting and knowing everything I do I can't always help him to see how amazing and special he is and let us in to help.****

I thought I'd take today to give a little Ethan update. This school year and this move has been way more then just rough on him. Three schools later and he's still asking for Mrs. Lee almost daily. So right now he's at a public school in our district that is supposedly wonderful with special needs kids and has supposedly wonderful staff equip to handle Ethan and his needs (which, by the way, are not very extensive compared to a lot of special needs kids/parents I've met over the years.) He has an IEP (Indiv. Education Plan), with a few modifications, he's in a standard school classroom and goes out in a resource like setting for a few times throughout the day, he gets speech/OT services regularly there, ect. If you have a child anywhere on the spectrum, with ADHD or any delays you should totally have one. With Ethan we also set him up a few years ago with a BIP (or a Behavior Plan) again.... this isn't standard for the school to give out and come up with on their own but you should definitely have one for your child, even if they aren't having behavior problems... actually esp. if they don't have behavior problems. It basically gives goals/ expectations for a child and his/her behavior in the school but also gives a little help to the staff about what their expectations about the child's behavior and reactions will be. The reason I say do it before there is a problem is that if you don't the is absolutely no protection for you/your child in regards to discipline. Okay, I'm off my soapbox, let me get back to Ethan's situation.... 

Ethan had an IEP from Barrow County Schools.... It was wonderful. It gave expectations/ goals for him that the school staff was constantly working on, it gave us as parents the touch points that we needed to re-enforce and it also gave step-by-step guidelines to follow if for some reason Ethan ever had one of his Autism Meltdowns (like this or this ) at school. Let's be clear here... Ethan is 9 nine years 2 months now.... developmentally his overall age is 7 years 2 months. (We are super proud of that number) In some areas he is more severely delayed (his gross motor skills age is 6 years 1 month) His logistics and planning skills are 22% below of where they should be for his age, his body awareness skills are 32% below an average 9 year old. He does not have these fits regularly, in fact even after everything he's been through this year with multiple schools he's only had 3 meltdowns, and they were all here at home. He's gotten upset and acted out a little at school but nothing major. 

Last week that changed. He completely broke down at school and this went from bad to worse. The schedule was changed, the teachers were impatient, Ethan was fixated on a library book and come to find out.... the teachers and staff hadn't even read his existing BIP. Yeah, it's the stuff Special Needs Parents have nightmares about. After picking him up and calming him down in minutes and hearing him cry all night about how hurt he was and how much he hated school and was scared to go back, my heart started breaking.

They handled Ethan all wrong and eescalated it to the point of no return. AND THEN they tried to suspend my 2nd grader for 30 school days.... yep you read that right.over 6 weeks of school suspension. For a 2nd grader? that is developmentally a Kindergarten er?! Ha! It was so ridiculous it was laughable. Thankfully we did have an BIP in place. Doug went in for a meeting with the school the next day and Ethan ended up with a 3 day school suspension so I've had him home with me this week. We have cuddled, we've read together, he's gotten in lots of Owen time and taught him how to play the Wii sports games, he's played and played with his puppy, he's baked with me and he's gotten his confidence back. Today he even got to spend time with his very best friend in the entire world.... and now he is HAPPY again! 

Spending more time with him makes me realize how amazing he is. He's smart and funny and intensely loving and yes, he gets angry easily. Yes, he has a low tolerance for certain textures or sounds, and Yep, he sometimes acts inappropriately for his age but you know what? He's full of so much life and imagination and talent and love that it's nothing but contagious. He's trying so much harder then your average kid to do even simple things like learn to dress himself and express his emotions. It wears on him and it hurts him but he's fighting a hard battle and refusing to give up. 

Don't get me wrong, having Autism and raising a child with Autism is hard. It sucks sometimes and it's exhausting and painful but IT IS SO WORTH IT! I couldn't imaging Ethan being anything other then who he is. Shortly after Ethan was diagnosed I scrapbooked my thoughts and they're still exactly how I feel. 

You can read the journaling HERE- it is autism.

Ethan, I LOVE YOU... just the way you are.
Mommy

 

Here are a few past Autism posts that really show my little boys AMAZING growth.... 

Anatomy of a Meltdown.

SensoryReccomendations from Ethan

Therapy Room 

Violence and Autism

Autism in Kindergarten

Pixar's Cars and Autism

 

Happy Valentine's Day From My Lil' Valentines

A few weeks ago the kids picked out some Valentine toys online (because I pretty much hate bulk candy being brought into the house) and the minute they arrived the kids started pestering me to get working on the classroom Valentine's (I love that they get excited for cute little projects like this.) We spent Sunday morning puting them together. 

Ethan picked out some foam airplane kits.... surprise, surprise, right? It's a cute little obsession he has with airplanes and I love that he wants to share it with everyone because of course he thinks they will love it as much as he will. Adorable. 

And Lorali chose Valentine's Kazoo's. She is our little music maker through and through. Hers are my favorite. They were a little harder to design but once I had the colors just right, I knew she'd love them. 

So what am I hoping for this Valentine's Day? Just a simple little love letter like THIS from my sweetheart.

Happy Valentine's Day!! 

J

 

Read

I love it when she reads to him..... LOVE IT. 

 Never, EVER Shout in A Zoo   By Karma Wilson  

 

She has always been my little reader. 

 

School Update

I know, my positing has been sporadic at best but I've got a new years resolution to fix that so stay with me! I thought I better update everyone on the Ethan/school situation since I've been so silent about it on here. Not because I've been busy this time but because it's been too painful of a process to go through let a lone write about. 

First of all let me say that I think you have to fight for your kids education no matter what kind of student they are. I fully believe in the public education system in this country working if it is applied the way it is supposed to. That being said? It doesn't always protect the students the way it supposed to and instead can be used as a weapon against them so, as a parent I think taking an active role as lead educator in their lives in the best thing you can do for them.... Having a special needs child? Yeah well that will only show the cracks or the strength in a school system faster...

When we moved this summer I knew that the hardest thing about it would be leaving the school... Saying good-bye was heartbreaking not just Ethan but me. I knew how lucky we were to have an entire staff in love with my son and so dedicated to his success. Everyone believed in him and raised him up. It took years to get to that point but we were finally seeing major success on all fronts. Before we had even recovered from saying goodbye it was time to start up school in a new district and a new staff. In the hopes of easing the transition, I called the Special Needs Co-ordinator back in May and gave her copies or IEPs and BIPs and even came into the school for a meeting with her. I was reassured repeatedly that everything would be set up for him to start in fall..... Come the week before school starting, I couldn't find anyone that knew our son even existed let alone knew he was about to be coming into the school. "Let's go meet the your new Speech Therapist.", I said at back to school night. "Nope, he's not on my rolls." We were told... okay, that's odd but let's go onto his teacher... "What? He is supposed to have an IEP?" his teacher questioned with a scared look in her eyes when I started telling her about Ethan.... yeah that's when this Momma started sweating it. Regardless of the hopes we had on the first day of school, things just went downhill for Ethan. Fulton County Schools wouldn't even let us have an IEP meeting in the 6 weeks he was at the school. Ethan started crying and begging not to go to school and when I went into the classroom to see what might be going on.... I was escorted from the building.

In the 6 weeks he was there, not one good experience was had at Abbott's Hill Elementary regarding my special little boy. If you have a special needs child and are consider that school? Just know that the entire staff was a nightmare to deal with in regards to special education from the Principle (who was the worst) to the Therapists (they actually didn't even have an OT hired for the school even though it was required.) and the teachers (Ethan's teacher's mantra to him was "You're allowed 1 question, 1 time, for 1 worksheet. After that you're on your own..."). On the flip side, I do have a main-stream daughter in that school and she has had nothing negative happen to her while at that school. Her teacher is wonderful and attentive, the PE, Music and other teachers she interacts with have been great. So the take away I have on it is that as long as you have a 'typical kid' you're okay but requiring anything above and beyond of that staff is just unrealistic. 

Okay, enough of my thoughts on them. :) After a month or so we were left w/ a decision.... So we made the leap of faith and put him in private school... We thought at the time that it was a great move. We loved realizing the different ways that Ethan learns and seeing his teachers expose him to learning techniques that were specifically developed for the autism spectrum. He wasn't making any friends but really his behavior was great, his handwriting and reading levels were improving and it was great to see him challenged. But things still weren't perfect. The director of that school was constantly butting heads with not just Ethan but, me. Ethan got in trouble with his teacher because he explained the theory of Evolution to his classmates and she doesn't believe in it and I was constantly defending me parenting to the staff. Ethan connected to the art teacher there but that was about it. Just a few days after Thanksgiving, I sent in a Coca-Cola to school and well... the shit hit the fan. The owner of the school felt like I was an irresponsible parent and was awful to me and took it out on my son, the teacher accused Ethan of being 'hyped up' and he threw a fit when they took it away. After a lot of arguments and threats we basically learned that because it's a private school Ethan's student rights (and even ours as parents) were non-existent. They can literally do whatever they want in every situation. What worked for the Director's Son was the philosophy set for every child there. We quickly learned that it was "Hayden's Way or the Highway." They could decide to follow the IEP or not they could tell us what diet to feed our child and if we had any concerns there was no debate. We could take our child out if we wanted it different, in doing so we would be forfeiting the thousands of dollars of tuition that we had already paid in advance. The owner got very ugly, lied to both Doug and I and refused to any type of mediation or compromise. It was shocking to see such intolerance and narrow-mindedness in a school founded on accepting these wonderful kids. 

So... We took Ethan out the first week in December and started looking for a private school that would fit his needs better. Ha! We were obviously wearing rose colored glasses.  TWENTY private schools later we still hadn't found a place. Some private schools really are Preparatory schools and it's much more advanced so obviously they couldn't accommodate him. There were quite a few 'Autism specific' schools but in visiting them it was obvious that Ethan was too hight functioning for those. Even his Therapist begged us not to put him in some of them because she felt like he would just learn bad habits that she'd have to spend the next 5 years correcting. Many were behavior/therapy based but the curriculum was always just a second priority. So Ethan was in a tight spot. Too slow for the advanced kids and too advanced then the Autistic kids....  So many tears throughout December and we were still left with no answers. 

Then Doug got the superintendent of Fulton County Schools involved....

Things started changing. 

Last Monday we put Ethan in a great public school that has the staffing to help Ethan succeed and the support of the administration. They have already scheduled an IEP mtg. They have been very active in communicating concerns and successes and even the Special Education Superintendent had checked up on him to see how his first week of school went. Obviously was are still stressed about it all but, we have a little hope. Ethan's really excited about it, he loves playing with kids again and having a schedule and he has said nothing but great things about his teacher. So I'm crossing my fingers and hoping for the best. 

Homework Help

Friday's and Monday's at my house mean Homework. Lots and lots of it for Ethan. Thankfully he has a good helper. ;)

Homework Days

An Ethan Update

Okay I realize that I've been more then lax about the blog since the move but I'm going to go back to normal.... VERY SOON! First things first... I thought I'd give everyone the official ETHAN update. Ever since we started working with Fulton County and the asking questions about the special needs departments we've been more then nervous. The first week of school we had trouble even verifying with the school that they had simply read his IEP (Indiv. Education Plan) from Barrow County. The administration at Abbott's Hill Elementary was less then helpful and since we had such a positive experience in the Georgia special ed public education system in previous years we decided to trust the system and take a leap of faith.... 4 weeks after school started and we had already had enough. His teacher had yet to prove she had complied with the existing IEP at all and the administration was not at all worried when we brought up our concerns. He was complaining about going to school, he said he never got help in class and his teacher was sending home work with giant red F's all over it and complaining that he was unable to do it. At home we'd read to him the instructions and he would immediately do it- successfully! Basically, they weren't giving him the little bit of extra help he needed and they didn't believe in him. His love of learning was practically gone, his confidence was shot and he stopped asking questions (which was the biggest red flag for us!). His teacher even discribed him as quiet and well-mannered. It was obvious she didn't know who he was. It was heartbreaking to watch and frankly, pretty depressing to realize that the work that countless teachers and administrators put into him and beleiving in him was useless in the move. After requesting and being turned down for a meeting with the teacher and then an IEP meeting Doug and I both realized that this was not a battle Ethan needed to suffer from. There was no choice but to remove him from that school. 

After a really stressfull week full of researching our options and praying for a little guidance we found the perfect place for him thanks to Georgia's SB 10.

 Ethan is now in a private school, Hayden's Way. About 1/2 the kids that go there are on the Spectrum and the other 1/2 are not. It's only got about 50-60kids but it dies go K-12. Ethans class has 7 students in grades 2-4. The next class up is 4-6. They are very project driven and his fingers are constantly moving as he's learning (like building a small pyramid whiles he's learning Egyptian history). He has only been going this past week but he loves it. His schedules quite a bit different, Tuesday - Thursday 8-3:30. And Fridays the school is open for additional Art, Music, Science and theatre classes. The teachers are in the building and are available for tutoring and homework help all day Fridays as well. He does get a lot of homework over the weekend and right now he hates that aspect the most but I think he'll adjust. Monday's I've scheduled to be his therapy appointments so Lorali doesn't have to be dragged around anymore and he gets the one on one attention he needs. After only a few days we've already seen a major difference in him and his confidence. It's wonderful to see! 

 

New Year - New School

First Day of School! 

That sentence brings me both anxiety and excitement. I'm ex ited for the kids to meet new friends to get back to learning and to have a schedule again... I'm nervous the teachers don't know my kids, I'm scared they won't follow the IEP or BIP and see the potential in them. 

The kids sure were cute this morning though! Lorali said that she wasn't nervous at all but she wouldn't eat, she complained that her tummy hurt and she had a death grip on my hand walking into class this morning. Ethan, of course, was jumping out of his skin with excitement. He practically shoved me into the hall after I dropped him off in his classroom. He was only sad his old teachers and bus drivers didn't move up to his new school with him. He misses his Mrs. Lee and Miss. Becky. He keeps asking if I gave Miss. Becky our new address so she knows where to pick him up at. Last night Mrs. Lee did send him the best video message that brought tears to all our eyes. She was encouraging him to do his best at school and telling him how amazing she thinks he is and reminding him that she loves him. She is definately one of those once in a lifetime-over-the-top teachers that we will all forever love. Even Lorali was wishing she could be in Mrs. Lee's 1st grade class instead of here. 

While I may not yet have confidence in the staff at the new school and I certainly haven't developed the trust that I'm going to have to have for the teachers there is one thing I do have complete faith in and that is my kids.... They are amazing. They will make it successfull and they will work hard. They never cease to amaze me and make me proud to be their Mom. I'm sure this school year won't be any different. Good Luck Today Lorali and Ethan! I love you! 

No words- just tears

After over 5 years in Barrow County Schools and and countless hours in IEP meetings and talking to teachers and helping in classrooms... we said goodbye. 

It was heartbreaking.

 

 

Robot Report

Last week Ethan's teacher decided to take a little different approach to teaching him and assigned him a book to read and learn all about then present a little book report to the class about the book.... she knew the subject matter was perfect for him.

In the story it talks about all the different things a robot can do. He can cook, clean, mow, sing, dance, bake and the very best thing he can do is be a friend. So all the little orange buttons on the bottom Ethan wrote what to do and then the kids took turns pushing buttons and making Ethan do various different activities. When they pushed the friend button he would give them a hug! It was adorable! Since one of the buttons was bake he wanted to make something special for his class and while I was looking up cookie recipes he found Bakerella's Cake Pop Cookbook. There was no talking him into anything else.

He was super happy to share such a fun thing with everyone and so proud of himself for knowing everything about the book. I was proud of how far he's come! This little man works so hard on everything he accomplishes in his life and to see him do something like this at eight was something we didn't think we'd see. He is amazing.