I Love You Because...

Lego Robotics on a Budget.

Someone as been watching a little too much Robot Combat League.

I love how his mind works.
Mom 

Rodeo Round-up.

At Christmas Husbandface and I came up with the great plan to go to The Ranch in Florida for The Rodeo. We drove in Thursday and Friday we spent the morning teaching Ethan (finally) and Owen to ride a two wheeler. Then it was rodeo time. My cute 8 & 11 year old nieces were not only in the drill team performing but also starring as Barrel Racers as my 4 & 5 year old nephews showed us how to mutton bust like pros. Even Owen and Ethan got in on the action catching greased baby pigs and earning money in the process. Bampa flew in for the occasion and it was such a fun, amazing weekend. Nothing like playing in the dirt and horse back riding to give you a perfect weekend getaway.

Since Ethan received The Harry Potter books for christmas and needs a little, ummmm.... coaxing and... let's call it modivation,  we decided to make the kids a deal. "Read Harry Potter Book 1- we'll take you to "Harry Potter Land". After all, we'd be there anyways, right? So of course my kids dutifully read everynight for months. Even Owen gets in on the action and the kids start taking turns reading to eachother. It was adorable.... Fast forward to reality and being in a new place and unfamiliar people around and the crounds and the not-so-according-to-regular-schedule of a rodeo and come Saturday no matter how hard my 10 year old Autistic sweetheart tried he just couldn't hold it together. There were lots of tears of no big deals, lots of disobeying and rule breaking and lots of meltdowns and frustrations. Doug and I have noticed that the first day we are somewhere new he coasts on the excitement, day 2 and 3 tend to be autism centered and rough and by day 4 we're back to smooth sailing and we have our happy son back. The problem with that is 4 day weekend trips, no matter how fun they are, it's always hardest on him and he's barely adjusted before it's over and we're headed home. We had planned on visiting Universal Studios on Sunday and come Saturday night, Ethan flat out said he didn't want to go if there was going to be too many people there (which in his mind is more then 10 people). So we broke the news to his siblings... as hard as they worked and as sad as they were, they realized that yep, let's do what we have to in order to make Ethan's life a little easier. Sunday morning we went to church, had lunch and played games... according to schedule. We still had a relaxing ,perfect weekend and my kids still had fun and played with cousins and made memories to last a lifetime. 

And I learned something... we are an Autistic Family... and we may plan and have fun things scheduled and they might not always work out according to plan... but that's okay! My kids have actually embraced it and set thier expectations and listened when I break up fights or remind them of eachothers differences and needs. We may not be able to take the kind of vacations that others do but, this is our life... unpredictacble, unorthodox and perfect for us.  

Sincerly and lost under a pile of weekend laundry catch-up,
Joanna 

 

PS- did you know baby pig poop stains clothes and the smell doesn't come out even after two washes? 

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My Thoughts on Understanding Autism, Asperger's and Violence

My mind has been racing this past weekend since I heard about the terrible tragedy in Connecticut. As a parent of three elementary aged children I was horrified and sicked by almost every tiny bit of information that was released since then. I haven't been able to sleep and there is still so much disbelief and shock that it just seems unreal. I home school my oldest and since the news broke I have been in a constant internal struggle with myself questioning if I should keep my 2 others home from now on to. Is that the only way I can protect them from a world so scary? 

Then the reports of the shooter having Asperger's shifted my thinking a little. I am sure the the shooters family is suffering just as terribly as the victims families, if not more. Hopefully it has a lot of people thinking differently. I posted 4+ years ago about my thoughts then on Violence and Autism but today I feel a strong need to update my feelings. I still stand by my original thoughts that My son needs me to advocate for him, to be stronger for him. But I've also come to understand him a lot better since then. I'm the one that's changed, and in turn it has changed him.

I  think this is going to be devastating for the Amazing Autism Community. Personally, I've already heard comments about how they need to be drugged and locked up at all costs and it has me both hurt and offended and protective. Instead of people trying to understand what is going on and reach out, people are scared and pulling away from something that they just aren't familiar with. My Ethan has already had people push him away because of his diagnosis. He's had parents pull their kids from him and teachers give up on him and this was before Friday! Personally, I am trying to fill that void. I just don't know if only 1 or 2 loving people can. 

Ethan lives in a world that he doesn't understand and that doesn't understand him.... on a daily basis he feels this and in turn he is soo much more sensitive to everyone around him. He can't express his emotions very well and he still doesn't even understand why people have feelings other then what he is feeling at that exact moment. That being said, he has an amazing pulse on people. A few years ago my SIL said it best,that "there are some people who soak up others emotions for them like a sponge and then, for better or worse, don't know how to let go of it themselves." Ethan is one of those people. He is a terrible communicator yet he can sense (and then magnify) your happiness or excitement or anticipation (which is why he's the best to be around at Christmas time!). Unfortunately it isn't always rainbows and butterflies, it also applies to more negative and harder to understand emotions like tension, frustration, betrayal, deceit, jealousy, and anger and disappointment. He doesn't even comprehend them himself yet internalizes those emotions and turns them on himself before you have even had a chance to identify them in yourself or those around you. Ethan literally feels your frustration or pain. Often I have put on a happy face for the kids during a trial and Ethan is NEVER fooled by it. He becomes agitated or restless and figgets. It's not just with me either, it's with anyone around him. If his little brother or sister is frustrated and losing his temper Ethan is often in the other room crying hysterically because he can't handle the upset. If the Baby is excited and giggling Ethan is bouncing off the walls and can't contain his joy and happiness. This is why homeschooling him has been soo wonderful. I've been able to fully control who is in his life and who is influencing him. I can see what triggers him and divert it. We started doing homework in the kitchen but that was too close to Daddy who was downstairs in his home office... stressed. By moving upstairs and being two flights away Ethan was better able to concentrate and be motivated and feel more empowered, because he wasn't sensing anyone elses stress. Frankly it isn't that he's full of empathy, it is that he is absorbing others energy. So his violent outbursts tend to be a microcosm of what people in the room are feeling. This translates in every area of his life. If I want him to or need him to learn something I don't so much have to tell him he can do it, I need to actually believe it, fully 100%. When he's around other kids, the same thing happens, if they are are healthy, well adjusted and kind, he picks up on that without talking (and yes, he often comes across as rude to them because of it). If others are feeling threaten and competitive or even testing the waters of life (as many 9 year old boys do) he picks up on that and doesn't understand it the same way as a typical boy does, so he becomes tense and confused and starts to feel like he's being backed into a corner- even if he's not the child being picked on or pushing boundaries. It's both fascinating and terrifying and only points to to me how important it is to surround him with positive influences in his life. No negative news shows, scary movies or shoot'em-up video games, because these things affect him differently then they do my other children. 

What I'm getting at is that these kids that are absorbing the world around them need to live in a world that is full of people who are up to the task of positivity and strength and growth. I have changed over the course of the last 4 years and come to understand this about him and most kids like him. But...One mother alone trying to protect her child isn't enough, it takes an entire community of acceptance. 

I'm so worried that now foster parents will be less likely to take him Autistic foster children, or more teachers writing off kids and creating situations for outburst so that they get sent to a more severe classroom, it's already hard for Autistic/Aspergers children to have friends, I'm worried parents will teach their children fear and won't allow their kids to play with kids on the spectrum. The more isolated and away from the world and community these children feel the more extreme their emotions become. 

I guess I'm just hurting right now and need someone, anyone out there, to understand instead of pass judgement. Frankly, As a country we need to open our minds and our hearts a little more, help others more and build support systems for everyone going through trials to understand that they are not alone. It'll strengthen us all.

    We gain strength, and courage, and confidence by each experience in which we really stop and look fear in the face... we must do that which we think we cannot.
Eleanor Roosevelt

     Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.
Marie Curie

 

Joanna 

*as I have said before, comments will not be censored in an effort to open the discusion and learn from eachother in a meaningful way. 

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Autism and Faith

Dreams

Dreams

I was taught to dream big. My entire life I've believed in magic and miracles and the unexplainable. I believe in dreams coming true. It's fuuny though, you work for so long for certain dreams only to realize when they come true that they aren't the ones that actually made you happy. Surprisingly, it's in the progress that the happiness is most often found. 

With Ethan's autism and school struggles I think I've had that moment. We spent years in IEP meetings and fighting for his right to an education. We worked with him and he improved and exceeded all expectations. We felt like we were 'living the dream' so to speak with him the last few years we had in Bethlehem. When we moved we knew we'd be starting over in most regards but we also knew that the end goal was totally worth it.... then everything got tricky. After the roller coaster 18 months we've had with his schooling and a lot of regression we realized that things weren't working and we started homeschooling... who knew that this is exactly where he belonged all along?!! He is thriving, I am enjoying it and he is learning and happy and progressing. It's amazing! This is soo not where I dreamed myself to be but it's where I was supposed to be all along. Nothing else mattered as much as I thought and what I was fighting for was within my grasp all along! If only I had beleived in myself as much as I believed in my son. 

JJW

Autism and Faith

I need to force myself to sit down everyday to blog and self reflect. In the last month my life has changed so dramatically (for the better, overall) that it's hard to sometimes remember to keep doing the things that are good for me that I was doing before.... like updating my blog! I use this place as my emotional file cabinet and it totally forces me to digest the struggles and savor the peace. Without that it's easy to lose the balance that I need so desperately. So... a few quick updates? 

Ethan's homeschooling is going sooo well! I love being with him more, I love seeing him happier and watching him discover the world around him. Yeah, I know there are hard days and I know he's tough to motivate but it is sooo worth it. I honestly had not idea how much fulfilment I would get from this. I have been taking the option of homeschooling off the table as an option for years, convinced that I wasn't enough of a woman or mother. Sure of what I didn't know rather then what I did. I had built up in my head that only wonder women could do amazing things like home-school. Guess what I found out? no one that home schools wears a cape at home?! Seriously, how did I not know how achievable this was?! A little research, a lot of prayer, and even more determination to make it work and ta-da! It's working!! It was absolutely achievable and within reach this entire time and I wasn't even considering it out of principle.... I guess better late then never, right? 

Ethan actually has a lot going on right now. Every six months we re-evaluate Ethan and his progress. How he can process concepts, his fine/gross motor skills, his perceptive skills, etc. They rate his individual strengths and weaknesses and give them an age score.... developmentally speaking. Like, gross motor skills are that of a 6 year 5 month old child or something like that. We've been doing this since he turned 4. EVERY 6 months. Most kids on the Autism spectrum have this done. From the beginning his developmental age was about 9-19 months BELOW his actual age. So at age 7 years 4 months most of his results were 6 years 1 month. His therapist kept telling us that this was perfect and actually good news because he was developing 6+ months worth of skills in the past 6 months. So what if it was "X" number of months behind, as long as he was progressing appropriately time wise. So we watched him develop at his own rate. Progress at his own speed. Learn on his terms. It has been rewarding and fascinating to watch the process and to understand our son more and more. Technically Ethan's official diagnosis is SEVERE AUTISM, VERBAL W/ A CHANCE FOR REGRESSION. We were told that because Ethan started speaking at 18 months then stopped that it was another 'red flag'. The Doctors cautioned us that this might indicate that later in his life he may possibly lose skills he had previously mastered. We took it and marinated on it, we were warned that this commonly happens at at 5 so when he took a little dip in developemental age then we were prepared. But then Ethan came back with a huge burst of skills at 7. We started describing him as not just High Functioning but 'typical with a few quirks'. Many people Ethan have met over the years could not tell he had Autism until they spent more then and hour or two with him. Yeah, over the years Ethan has had a lot of struggles and Autism has certainly made his life harder but overall I've maintained that Autism isn't this big terrible life sentence that is to be mourned forever.  There is growth and happiness and progress. Maybe it's just this week but I'm not feeling the Autism love lately.So the eval results came back this week.... usually they say he's about 1-2 years behind developementally. We were expecting that. No. No. No. In 6 months he has regressed in so many areas its scary. He's regressed in things he's had conqured for years. He's regressed in things all of us have worked so hard on! He's regressed about 2 years in 6 months... So now at 9 years- almost 10 years old. He's now developementally 5 yrs and 9 months. I really need a punching bag labeled AUTISM REGRESSION right now. 

In other news, I got a new calling at church. Since we moved here I've been on the RS Activities committee and that was actually really a perfect calling for me. I didn't have any pressure to attend every Sunday, I felt like I was contributing and still being true to myself. I got to know a lot of amazing women and as childish as it sounds, I was able to kinda lick my wounds and heal from my last ward. Because Doug helped so much with the kids, when I went to church I was able to focus 100% on me and my testimony. I didn't go for the social aspect or out of abligation, I went for me and it was wonderful to be able to put that part of my life back together again. I have felt more like myself this past year and more true to who I am as a person. Sometimes in the hussle and bustle of life just being who you want to be gets lost. I've really been trying a lot lately to be who I know I am, all the time and to be the person I know I want to be, regardless of situation. Life happens but I 'm trying to not let the unexpected become excuses or road block to who I want to be. So what if Doug's not a member anymore. I am and I like who I am in the church. I am happier being the Mormon me. Respecting Doug's views is part of who I am but, that shouldn't  can't change who I am or what I believe. Before he left I was able to not really put a lot into my own testimony. I knew it was there and called on it when I was in a tricky situation, I was constantly in callings and loved sharing it with outher but I didn't actually put anything into it to help it to grow, to strengthen it or maintain it. After he left, for some reason, it was harder to just call on it when needed and holy cow, I needed it! When Doug announced he was done, I was in the Young Women's persidency. I specifically asked the Bishop at the time to please keep me in that calling. He released me the next week. I begged to please give me another calling where I could be a part of the ward.  I wanted to give and felt like being in a calling where my testimony was desperately needed my force me to rely in it. Looking back I can now see that what the Bishop was trying to give me was time exactly like this past year. A year for myself.  A year to re-center myself and freshen up. A year for growth instead of depleation. I didn't see it that way at the time.. Even when it comes to Husbandface and his pain, people in the ward rejecting him and stopping friendships just when he needed it most, I can now see that some of those people were hurting and scared to. They had leaned on him spiritually and losing that was a little bit of a shock to them just as it was to me. They needed time to lick thier wounds and heal as well.  I guess time really does heal old wounds. So back to that calling I mentioned... A few weeks ago the Bishop called Doug and I into his office and asked if I'd accept the calling. The entire ime he was speaking I just kept going over in my head, "Why would they want me to be in that calling?", "Do they even know me?", "I'm not the typical person for this!" So, yeah. To put it mildly I was SHOCKED when they asked me to be in the Relief Society Presidency. Don't get me wrong, I am honored and excited for the opportunity to work the crazy amazing women in the Presidency with me. I just hope I don't screw it up.

I guess this is all where faith has to come in... I say I have Faith and now it's time to test it. 

Joanna 

Surrender

The last two weeks of my life have been really impactful. In just two weeks I have changed... dramtically. I have been frustrated to tears, I've felt enormous weight and responsibility on my shoulders and I've resented every aspect of my life. I've been the worst mother I've ever been and I've not been the best wife... needless to say I was scrapping the bottom of my reserves and the barrel was empty. I had nothing left to give... or more acurately nothing more I wanted to give. 

Between all three kids in three different schools, Ethan in therapy 2 afternoons a week and Owen and Lorali in dance I was in a constant state of runnig around like a chicken with it's head cut off. I hated every minute of it. It was a constant waste. I was trying to surrender myself and my time to the school year. Thinking it was for the best. In reality it was the worst decision ever for my family. Everyone was miserable. 

Since school started 7 weeks ago Ethan has been bullied at school. A LOT. He's come home asking what new colorful words mean because he's being called them, he's been scratched, excluded, teased and taunted. He's crying the minute he gets in the car, he is hiding in his room at night refusing to be with the family and I am losing my happy, inquisitive son. NOT TO AUTISM to the school! I've spoken to the school administrators about it but they repeated feel like it's acase of Ethan's perceptions not malicious intent from other kids. It's on the playground, in the lunchroom, in the class and there is really no escaping it. The final straw came when I was brushing Ethan's hair 2 weeks ago and found a big chunk of chewed up food.... I asked Ethan what it was and he said someone in the lunchroom had been spitting on him! He had told the teachers in the room but they had told him to just move seats. I cried for a week, met with the school counselor, teachers and special needs coordinator and still didn't feel like this was something they considered a priority. I was furious at the world for a week and ended up taking it out on my family. On top of this I had been noticing that the work he'd been bringing home from school was SIMPLE. 9+1, 6+4, 8+7, etc. on his math worksheet. With comments from the teacher like "Ethan got 100% on this one! Great job buddy!" What?!? Of course he got 100% That is Kindergarten math! He's been out of Kindergarten math since before he left kindergarten! He is supposed to be in 3rd grade, not 1st! They'd send home journal entries that had two sentences and were 100% illegible. When asked about it they responded with 'We're just glad he's willing to do anything'. What?! Yeah.... They don't believe in him and they certainly do NOT see his potential. Yes, Autism is a diagnosis but it does NOT mean STUPID. Ethan is brilliant and even though he learns differently he loves to learn. He absolutely wants to be the expert on practically every topic he learns. It's a joy to be with him and to see him learn and understand. Don't get me wrong, I think the teachers are doing the best they can but they are doing the bare minimum. They are refusing to seperate from the pack and become the cream that Ethan needs. They're happy with mediocre. I tried to have faith in the system and I just can't do it anymore. I'm done being the fighter. 

SO after a long hard two weeks of frustration, arguing, tears and prayers. It looks like it's finally time to Surrender. Surrender to Autism, Surrender to the school system, and surrender myself to improving Ethan's education. No more self-doubt allowed. Ethan needs me. He needs Doug and he needs to know without a doubt that we believe in him wholeheartedly. So Doug and I have decided to homeschool him. In the past I've come up with excuses... I don't know what he needs, I'm not equipt to teach him the way he needs, I don't have a degree, I don't have the time, I don't have the patience.... trust me I've thought of 2 million and 1 reasons why it's a bad idea but ultimately Ethan needs me. He's been in 3 different schools, with 6 different teachers in the 16 months since we've lived here.... it's not fair to him anymore. Parents can not force teachers to believe in thier kids. Frankly, we got really lucky in Bethlehem. Ethan had teachers that believed in him and worked with him and cheered him on in more ways then we as parents did. They knew he was capible and they were not going to let him do anything but succeed. They learned right along with him. How to teach him and how to connect with him were ever changing targets and they were determined to ease his struggles and they taught me to do the same. They taught me to believe in his abilities and use that to his advantage. So while I don't have a degree, and I don't have the best of everything I do have my childs best intrests in mind and I know that he belongs with me. I can put everything I have into him and teach him the way he needs to be taught. I know I can remind him of his passion for learning, I know I can give him his confidence back and I know he will improve and again, exceed all of our expectations. 

"Surrender does not mean being passive, it means engaging yourself totally in what you are doing and then letting go of the outcome."
-Yogi Amrit  Desai

 

Wish us both luck!
Joanna  

Sunday Morning Beauty Routine.

Getting Ready for Church w/ Face Masks...

 

***on a side note, Ethan ROCKS! Ms. Margaret and Ms. Mary ROCK! We LOVE OUR OT's!! Can you believe this is the little boy who hated to even get wet? He hated texture and getting his hands sticky and walking in bare feet! The kid that had to have everything the exact same tempurature and all the clothing had to have tags cut off and be the same material.  He wouldn't eat things that were wet or slimy and he'd actually throw up if he touched something gross. THE SAME KID? AND NOW HE HAS A FACE MASK ON!?!  Ethan is our hard worker and he can overcome anything! This picture is proof. Seriously, Occupational Therapy for Autistic Kids Works WONDERS!!! 

Blue Lake (aka Crandell)

We've been in Waterton a couple days and our feet were begging to be on the trail, any trail. Since we are now completey out numbered by the kids we figured we needed them on our side. We picked the simplest hike we could think of so we didn't wipe them out before we got through our 'hiking list'. 

Crandell Lake as it's officially called, (for some reason everyone in my family has called it 'Blue' longer then I've been alive) is only 2 km from the lower parking lot. I've gone there straight from the backdoor of the cabin/townsite (7.1km one way) but again, I wanted to keep it simple for the kids. I promise anyone can do it! We even saw a friend of my grandmother's on the trail, Sister Spackman, who had just celebrated her 92nd birthday! It was the perfect juxtaposition to my little Cam on his first Waterton hike. 

It's also the perfect hike to remind the kids of hiking etiquette and rules and teach them a few new ones. Even though it's short you really do get a lot of reward for little effort on this hike. There are always amazing views, wildlife, tons of wildflowers and there is usually great fishing. 

It's a perfect hike to do in the late afternoon, pack a dinner up and enjoy the solitude of the lake. In past years if we get into Waterton early in the day we'll pack up a lunch and come straight up here in the afternoon just to welcome us into the park! The kids favorite part had to be the wildlife that well... got extremely friendly. (they may or may not have invited it to our picnic with a few leftover trail mix that 'fell' in the dirt)

We loved just sitting on the banks and teaching the kids how to skip rocks, we loved the picnic and watching Bampa fish and even though Ethan had an autistic meltdown when things didn't go his way, it was actually short lived and he was able to calm down super quick in the beautiful setting. (Frankly, Ethan's amazing resilience and change made me wish we could live here.)

Cam even loved it!

So... who's coming up to Canada with us next year?! 

Joanna 

 

 

My May Excuses.

I've been uncharacteristically quiet lately. Let me give you a few of my excuses.... 

1. Cam... seriously. He's cute but he takes up a lot of my limited free time. (and I love it.)
  

2. Unfinished Projects... I know I have a never ending 'list' of things I'd like to do and get done but, the past month I've really been trying to get caught up. We haven't got everything done this spring that we had hoping (like the pantry project) but, we have gotten our Hardwood Floors in, we've worked a lot on the yard to set up our backyard movie theatre , and we spent a lot of time on my dream laundry room. In fact, I'll post pictures of the progress soon, promise. 

3. A new hobby obsession... LOTS of pictures will be posted as soon as I have time to upload and edit.

4. HAPPINESS. Yeah, I know it sounds corny but, I'm probably the happiest I've ever been in my life and I've spent my time actually enjoying it instead of focusing on documenting it. I know, I need to have more of a balance because I know I will look back on this amazing period of my life and wish I had pictures of every second but, really I'm happy, my kids are happy and my husband is happy so I'm not going to worry too much about anything else for now. I miss writting and that therapy so I'm trying to plan time to really sit down and gather my thoughts so I'll be updating more. Sitting down and actually vocalizing it in type has made me realize that just the joy of this last few months has made all the struggles and frustrations of pregnancy or the struggles and pain of autism, & the stress and pain and growth of marriage over the last 9+ years worth it.... to get here and WE ARE HAPPY!! I hope I'm not jinxing myself but allowing ourselves to be happy has actually been something we've had to learn. It's something I don't want to be fleeting but ever present and I'm looking forward ot what the future holds, for all of us! 

Thanks for catching up and Enjoy your weekend! 
J 

 

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