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

 

Overwhelmed.

This June has been a rough one at my house. I've never felt like such a failure in my entire life as I have in the last 22 days. I've been a terrible Mom, an awful employee and an even worse wife. I feel like everything is falling apart and nothing I am doing is helping. I'm barely keeping my head out of water. My kids are miserable and I can't seem to GET IT TOGETHER!!! Ethan is having major Autistic fits on an hourly basis and it is freaking exhausting! He is more and more violent by the week and the more I try to fix it and help the more he hates me. I feel like I'm loosing his personality. I don't see or hear very much of his giggle, over-the-top affection or bouncy attitude anymore. It's like he's loosing his spirit and it breaks my heart!!  I thought we were over this part of it and I WAS NOT PREPARED for it to come back. I keep telling myself that it is just a stage and I hope that is the case. Maybe a growth spurt or the adjustment in the summer schedule maybe it's the heat? Seriously, I'm grasping at straws here!! I want my sunshine boy back and I want my happy home back! 

Enough of my whining though. I'm switching tactics.... This week is all about the reset button. More patience, more smiles and more structure. We're getting the house in order and cleaning, we're reseting the way our home is supposed to run and trying to start fresh! WISH ME LUCK!!  

Sensory Recommendations... from Ethan.

This one is for all my friends in the Autism/Sensory world... 

 Ethan's top therapy products.

Compression Vest (and let me just tell you that THIS model is the cutest ever, don't you think?!!!!) 
for decompression and calming him down. Totally helps him concentrate and calm down (helps his temper.)

Seat Cushion - We've used this everywhere! When we did our road trip last summer, this was on his car seat, at the dinner table, in school.... helps his lesson the figgeting. AWESOME.

Chew Stixx - This one was developed my Ethan's OT because he bites, chews and licks.... EVERYTHING. She gave him a proto-type over two years ago and it's still in the same brand new condition even though he uses it DAILY. They now have different colors, scents, flavors and shapes (and Ethan has most of them, his favorite is orange) they are all wonderful. He carries two in the car, one in his backpack, on for his desk and three for his bedroom. (oh yeah, and yesterday we just got the pencil topper version for school too!) I really could NOT live without these, he would destroy all of his toys, clothes, seats, and furniture without them. 

Weighted Blanket- A few years a go a few AMAZING friends got together and made Ethan a weighted blanket. Seriously, it's amazing and it has worked wonders. This was another item that has  to come with us on vacations. (Although when we fly the poor airline folks HATE it!) :) It helps get him to sleep, and KEEP him asleep. he hasn't used it as much over the last 6 months so I thought he had grown out of it but, this last week neither Doug or I have slept at all because Ethan can not stay asleep for the life of him and just wants to get up and play or stim all night. So I guess we'll be using it again because I am one tired Momma!

Slant board- This has been invaluable since the start of Kindergarten and I wish we had bought it earlier. We sent it to school (which actually irritates me that they didn't provide it.) and he immediately started actually completing his work, getting better handwriting and focusing more. HUGE HELP! Heck, I think all  kids would benefit from this in pre-school and kindergarten.

THE Swing- This is definitely the most popular toy at our house. Kids BEG to play on it and we have to remind them it's for therapy (although it's played with a lot too, so I guess that's the perk of FUN therapy) This is in our garage/therapy space and Ethan will fall asleep in it, read books in it, go there when he's annoyed with everyone... I wish they had something like this at his school. It helps him concentrate, it helps him wind down and it helps him use up all that energy. He loves it and I'm so glad we found something that isn't clinical! 

Trust me on this... we've had hundred's more therapy products and supports... these are the best! 

Wednesday's with Margaret

No wonder he wakes up excited on Wednesday's! This is what he has to look forward to! I've said before how much I love Peach State Pediatric Therapy before but I think it's only after I see sudden burst of progress that I sit down and think about how far back we'd be if we didn't have this amazing resource to help, support, push and encourage. Ethan's been going to OT there for 2 years and has been doing Speech there for over 6 months. The entire staff is near and dear to our hearts.

This past month Ethan's had a hard time developementally. I've had a hard time going through the yo-yo emotions of austism. Good days and bad, I know. I think a lot of it has to do with my own fears, rather than him. I'm scared he'll regress. I'm scared his violence will come back, I'm scared of him growing up and the same time I'm scared of him not proggressing. (see, I told you it was a yo-yo effect!) In the end I think seeing Margaret on Wednesdays, is therapy for both of us. She calms me nerves, ives suggestions on coping and encourages growth- from Ethan and me! Horray for Wednesday's! 

TROUBLE

Yesterday at 10 am I was working on a Tombow project and my phone rings. I see on the caller id that it's Ethan's school and I hesitate to answer. This usually isn't a good sign. I was right. IT was the principle. Ethan had hit a child in gym class and I was told to pick him up within an hour. He is being sent home and can not complete the school day. "We won't call it a suspension", she says "but, he does need to be picked up as soon as possile.". I tell her that I will be right in and that I'd talk to the teachers involved to get this resolved. "No, Ms. Wallace. I am the principle. I have made my decision and he needs to have consequenses to his actions regardless of his special needs."

I think if there were an infrared camera on me at that moment you would have been able to visually see the steam coming from my ears. I understand that he needs consequenses. But sending a Kindergartner home from school? How does that help his education in anyway? It's not the school's responsiility to develop my child's character. It's thier job to educate him.

I was able to drop Owen off at my sister-in-law's house (THANKS SUE!) and run over to the school. Ethan has what is called a BIP. A Behavior Intervention Plan. It's an attachment to his IEP (Individual Education Plan). All special needs children across the US have IEP's. They state the childs needs in his eduation and his goals for the following year. parents, therapists, Teachers and Administrators are all invited to the meetings to make these documents. All hoping to provide the child the best possible education, given the child's needs. Ethan's BIP (along with any child that has them) has the proper protocal written out as to how to handle Ethan's BEHAVIOR. In his case it says things like, remove him from the room or area when he's irratable. He has to have three warnings (at least one of them visual) before he is punished. He can have privledges taken away but not recess (he needs the sensory outlet). He is to be sent to the resource room (when he has acted out) to complete his work. The list goes on and on as to how to handle Ethan and his behaviors in relation to his autism. Either the principle doesn't know what a BIP is or she doesn't have any respect for them.

I went in to talk to her. She was in a meeting so I went and talked to the special needs coordinator and then the teacher. Obviously Ethan hitting another child is a big problem. I understand that it needs to be taken seriously. I also understand that the school needs to address the problem. Sending a kindergartner, who already begs not to go to school, home because he hit will not teach him anything. I asked the special needs teacher why he wasn't in the resource room. Her response? "We don't have the staffing to cover that." What?! So you wrote it in the IEP just to blow smoke up our arse? knowing full well that it wasn't an option 90% of the time? She also told me that this 'incident' happened at the end of PE and he had been having a hard time the entire 20 mins. previous to it happening. Why then was he not watched more closely or removed from the situation. He's flipping autistic people. You know he can lose control at any minute. I asked the teacher what she thought of his punishment. Her response, "I don't even know what that is, we haven't discussed that together yet." Excuse me? So the principle, that has only ever interacted with my child in the halls, has unilatterally decided to 'suspend' (but not call it that) my 6 year old? Whew, that infrared camera would have been hot to the touch at this point. When I finally got in to talk to the principle I was ready to cry. When will the school administraytors ever show me that they have any understanding or compassion for my son? Sending him home is most definately not helping his educational carreer. It's the school not taking responsibilty for the situation. The staff was not watching him closely enough and they weren't following his behavior plan that we had set for this exact purpose!

In the end, with some major help from his teacher, Ethan was NOT sent home. He WAS sent to the resource room as per his BIP and they changed schedules around. He spent the afternoon doing his work one on one and had time reflecting on his choices while he ate lunch in the classroom. He came home remorseful and wrote letters apologizing to everyone involved and today he went to school ready for a fresh start. We have a new BIP meeting scheduled sometime next week. I'm glad that I was able to get out how I was feeling and even though I'm sure the principle hates me, it's worth it. You have to fight for your child's education because trust me, NO ONE ELSE IS GOING TO DO IT FOR YOU.

Autism Outrage

This past week the local news did a story about an Autistic Child in the Georgia school system. This story  made me sick. Please take a minute to read it. I have so many thoughts racing through my head about the whole thing (and most aren't appropriate to post online). It certainly has hit way too close to home for us.  I am hurting for that family. I am hurting for that boy. I know the struggle, the meetings and the work that goes into every school year of an Autistic child's education. I know that every parent wants their child to be in the best situation possible and I think it's awesome that his parents were smart enough to record the situation and get the answers that they needed. I'm annoyed that the judge still didn't hold any one responsible or make any specific charges to the abuse. I wonder about the accountability and responsibility of the entire system in situation like this? How do you prevent it from happening again? How do you insure it won't happen to you? Who can you trust in a situation like this?

This school year has been rough for our family. With the first 6 weeks of school basically being a waste of time. We really did not like his teacher, we were not happy with the attitudes or the administration and we were hurting for our son. When we finally pushed, fought and forced him to be put into another classroom with another teacher, it only took a few days for us to KNOW that we had made the right decision. Thankfully the level of trust we have with Ethan's current teacher is just as high as we'd have with our own family members. She has so much love, patience and compassion in her little finger so when we send Ethan to school we are sure he is in loving arms. Next year Ethan will be in her classroom again and I guess you sometimes have to see how terrible you could have it to see how wonderful you actually do have it.

Now I'll just start praying that when he goes into First Grade we can find someone just as amazing as Ms. Stephens.

Violence and Autism

This post is very hard for me to write. Over the last few months I have been hurt, A LOT because I am so open and honest on my blog but, there is a huge part of me that feels like many of the issues I bring up are too important to be quiet about. Today's topic is just another reason why I continue the dialog and the honesty. I feel like there are too many people that do not understand Autism (me included) and there are too many families dealing with this disorder, searching for help. If this little spot in the internet world does anything, I would hope that it let's other parents of Autistic children know that they are not alone and maybe it might help others understand me, my family and others with Autism a little better.

Ethan's been having a rough week or so. He's almost 6 and starting a very scary phase. Extreme Violence. Three times in the last week he has bit people hard enough to still leave bruises, marks and draw blood. He pulls hair, he hurts himself, he can NOT calm himself down. He's having fits almost daily and now punching, kicking and attacking teachers at school. When he is having these fits it's heartbreaking because you can see it in his eyes, he is not himself. I see him upset and hurt and I am desperate to reach him and I don't know how to. As a parent you want to only see the good in your children but when these episodes are happening you are forced to see the ugly side of Autism. You look at it in the eyes and suddenly close your eyes tight like you're watching a real life scary movie and you hope that when you open your eyes again, we're onto the next scene. But instead of a new scene you see your baby screaming out for help... and the real life horror is that you don't feel like you can do anything about it.

I have spent most of the morning researching this on the internet but, it's not as talked about as you might think. It is acknowledged as being a common trend and many more horrific stories are told but, there are very few suggestions on how to handle the situation before it becomes worse. Many links and discussions automatically point towards sociopaths. It's a terrifying thought as a parent and after stressing over it all day I think it's unfounded. These Autistic Children need so much more of everything then regular kids. They need more patience, more explanation, more therapy, more logic and order... the list is a mile long and I know many parents are like me. We feel like we are doing the best we can. Hanging on to the end of the rope trying to pull our children into our worlds. We want to fight for them and love them and make their dreams come true just like every other parent out there. Being a parent to any child nowadays is stressful but add on to that Autism, it feels like you a fighting a losing battle some days. I'm not saying I have any answers because trust me, we are still searching for a solution at our house but I do feel very strongly that there is an answer out there. There is something I can do for my child that will make his life easier. Something that will help him connect to others and something that will help his violent behavior to stop. And you can trust me on this, I WON'T STOP UNTIL I FIND WHAT I AM LOOKING FOR.

I'm sending Good Luck and Love cyber-vibes out to every other parent, grandparent and family looking for those same things.