I Love You Because...

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 

change

ever have one of those moments where you think your life is perfect just the way it is? I've had a lot of them over the last year or so. A lot of moments wishing my kids would stay at just these ages where they're so fun and innocent and I can protect them. Moments of accomplishment and satisfaction. Moments with friends and family that stop me in my tracks. Moments where I wish I could take a picture of Doug's eyes to remember how they change when he looks in my direction. Heck, I've even had moments where I can palpably feel my own personal growth and I'm kinda sad I can't just give myself a high five. HA! Today I didn't have any of those moments. 

Today was the moment when you realize how delicate the balance of it all is. How one mis-step can CHANGE EVERYTHING. One trip-up that turns into a stumble then a fall that causes injury and can't ever be recovered from. 

Today I woke up on the wrong side of the bed and the dominos were in motion.....

 

.... and my life will never be the same. 

-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  

Dear Husbandface

Dear Husbandface

It is 4 am and I am up. Can't sleep tonight so I'm attempting to be productive, ya know? Catch up on blogs, check out the latest gossip on facebook and surf for the latest pintrest ideas to add to your honey-do list. The thing is, I'm trying to do all that and I want to be productive but all I can really think about is you.
You and Me.

and Us. 

and our family. 
I think about that first day you took me to Beaver Tail Lighthouse. I think about how young we were and how little we slept. We could get enough of each other. and we weren't even dating, yet. you were my best friend. it was awesome.

I think about the day you proposed. Walking up the trail, holding your hand, the sunset reflecting off your red hair. I think about your nerves and I can still hear your voice when you asked me to be your eternal partner. I responded by kissing you and you got flustered because it wasn't a yes or no. really? how could I ever turn you down? I remember your hand on my head. and smiling so big my cheeks hurt.

I remember being newly-weds and laying in bed telling stories. and coming up with dreams of our own. thinking about a future home or names for our someday kids. I remember talking about retirement and travel and you whispered in my ear that none of the specifics mattered as long as we were growing old together. it made me giggle. you were already old, right? 

Remember when Ethan was a baby and you'd lay on the bed with him on your chest? I'd complain that you weren't sharing him. You'd laugh and hold him tighter and as soon as he was asleep you'd hold me tighter. I like you holding me, I wish you were holding me now. but I won't go up and wake you now, because I love you too much.

I think about the trials we've been through. The scary moments and tears and lonely times that were only lonely because we loved each other so much. I think about how close I came to losing you and losing those dreams and it still hurts to remember how much I had forgotten that you love me. That's that hing though, you did always love me. even through it all I knew we had something special. I just didn't know what our forever would look like anymore. 

This past year in our lives has been amazing. The growth and the peace and the smiles and your strength. You were the best husband in the world this pregnancy, you know that? and I wasn't the best wife, which makes it even more amazing. You know the other day when you pointed out my first wrinkle? it bugged. but it didn't. you touched it and you loved it. then you kissed it and made me laugh. you're always making me laugh. probably because no matter how old we get together you will still be my 11 year old. Our kids are wonderful and lucky to have a Dad that plays legos with them and goofs off with them and answers their questions and shows them by example how to work hard for others. 

Speaking of lucky. The thought of spending eternity with you as your partner still gives me butterflies. Eu Te Amo.

Forever,

J

 

 

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!!! 

Prayer .

6/21/2012

I haven't talked about religion for a while on here and it's mainly because of self-reflection.

Last week about 40 minutes before Lorali's Party  huge thunder clouds started rolling in. It got suddenly colder, darker and windier. Keep in mind this party was an outdoor/garden party and I had been up since 6am preparing it for her.... I starting having a little mini breakdown. Lorali saw the panic in my face and realized her plans were in jepardy of being moved inside. She called her friend, Cassidy, to her room and they prayed then came running downstairs to tell me they were sure the rain clouds would pass because they felt the spirit tell them so.... sometimes I wish I still had the faith of a child. 

 

I am comfortable and confident in my beliefs, my testimony and my personal relationship with my Savior. The problem I've been having lately is the feeling of lonliness in that I have in those feelings. No one seems to understand my choices. No one is in the situation I'm in. Basically I've been feeling really isolated in the church. I know that it's not my ward or even the church as a whole, It's me feeling this way but, it's still left me unsatisfied and I've been praying about it for the past month. Praying to not have these feelings, to find a friend who I could talk to about it or some sort of validation. Today I got my answer in such an obvious, undeniable way. I'm not alone, there are a lot of people in my situation and getting the same answers I am. The July Ensign came out this week. Read THIS ARTICLE, When He Stopped Believing. It is 100% me and my feelings and put so eloquently. The Lord is mindful of us in 'non-text book' situations and I just needed to be reminded of that. Sometimes having faith in the Lords plan for me means  having Faith in the past answers I've recieved and focusing on that instead of the other feelings that my own insecurities create. I love answered prayers... they make me happy.

There you go, my 2 cents for the day. 

Joanna  

 

Party Planning 101

For the last week Lorali and I have been in full fledged party planning mode. My baby girl is turning 7 and hasn't had a party in 3 years. (it was too traumatic on mommy) and now that I won't have any other little girls to throw parties for she is benefiting from all the ideas I've been saving. I gave her a choice of three different parites to choose from, Spa Slumber Party (complete with Movie Under the Starts, Pedicures and Breakfast the next morning), Tea Party Bruch (think Alice in Wonderland frivalous) or an American Girl Themed Party (including all thing vintage!). Well, if you've met my princess you'd know she'd come up with her own idea... which really is the combination of all three ideas! 

First I had her help design the invites.... She was very specific on what exact colors to use and what fonts she wanted and where she wanted things placed (It was a proud moment for me.) I took a picture of her and Lanie and turned that into a custom American Girl silhouette.... LOVE how it turned out! Then she tied them up w/ ribbon, added a tiny custom label and ran out the door to deliver them before I could even blink! 

It's been fun to have her plan every part of it from the list of food I offered her to how she wanted to serve it, what to order for it and what she want's to do w her friends. I love seeing her personality come out in everything she touches. One thing is for sure... this is a party just for her and she is going to love it! 

Enjoy your Thursday! 
JJ 

 

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 

 

Babysitter Bliss!

Something magical happened when we moved here last summer. It wasn't something we noticed immediately but, as we look back a year later we can see it and everyone in the family has noticed the difference. We now have babysitters! I know it sounds silly but seriously, it's made a HUGE difference to our family! Doug and I now go out on regular dates and it's wonderful. We go to the theatre, we check out great local restaurants, we're able to go shopping by ourselves and sometimes we get to go golfing with friends... 

Having a weekly baby-sitter is really something we haven't been able to enjoy ever before and now we have multiple babysitters we'd trust with any of our kids all within 5 minutes of the house. It's been over 9 years since we could go out on a whim to the movies or to dinner by ourselves and it's completely changed our marriage. We have so much fun together and are able to be ourselves instead of just in parent mode. While we both look forward to being together all week sometimes Doug forgets exactly who his date for the night is...

(maybe he still has a thing for pirates!)

Thanks for stopping by! 
J 

Summer Swim

Cam's first swim, hope your Memorial Weekend is going to be as fun as ours!

Love,
J