Five Years

This week marks five years that E-man was diagnosed with autism.

We don't usually do anything special when this anniversary comes around but I always make a mental note. I am so proud of our boys and their progress. I'm also scared as hell about the future. I know those feelings will go hand in hand for as long as I live. That much I've learned in this last five years.

A couple months ago we decided to try to get into an event put on by Surfers Healing. It's an organization that began with Israel 

"Izzy" Paskowitz, a professional surfer that has a son with autism. It started out small, he would take out a few kids at a time to get them up on a board and surf. Over time it became bigger and lots of families wanted their child with autism to try it out, as it seemed to have a calming effect on even the most anxious child.

In April we waited for the designated time and along with thousands of other families put our names in for a chance to surf.

The website went down and we got an email that we would be notified if we got in within four weeks.

Time went by and without hearing anything from the organization we had resigned ourselves to not being chosen.

Then two weeks before the event we got the news, both boys had been picked to surf!

It's amazing really because I've read that some families have tried for years to get in and here we were getting in on our first attempt.

We quicky decided that since the event was in Malibu that we would include Disneyland in the trip and make it a family vacation.

We recruited my mother in law and niece to help us wrangle the boys in our So-Cal adventure.

The week leading up to our trip everyone got sick. The boys, my mother in law, my niece, all with different ailments.

So I was a nervous wreck, worrying that one of us would be too sick to go. That on top of just general fears of drowning, shark attacks and the kids getting lost. You know, typical parental worries. The night before we left LB got a fever, if I had Xanax I would've been popping them. The hubby pointed out during one of my worry-fests that just because something might be difficult and we are scared does not mean we shouldn't do it.

Damn it, I hate when he's right.

The morning of the trip everyone miraculously felt better and we headed out.

The road trip went pretty smoothly and we arrived in Anaheim. 

We took the boys swimming in the hotel pool and they had a blast.

The next morning was the surfing event. We got there early, registered and all of us played in the water while we waited our turn. E-man was in heaven, he was giggling the entire time while the waves pushed him around and he basically body surfed in the shallower part of the water. LB wanted to go in deep, which was scary because the shore had a deep slope and it was hard to feel like I was holding him well enough and have good footing. But we figured it out and the boys had a good time. 

There were a ton of kids, all different levels of ability. We saw meltdowns and potty accidents and stimming, no one batted an eye. We were with our people even if we had never met before.

When it was time for the boys to surf we lined up with everyone else in our time slot. E-man was getting upset because, well, lines suck. LB was the first to go with a young guy, I watched my baby paddle out until he was so tiny I could barely tell who he was amongst all the other surfers.

They had to wait for some decent waves and we could see LB standing on the board, dancing around. Then he jumped in the water, holding on to the board while he swam around. He had a wet suit and life jacket but of course my heart was in my throat while he treaded water.

Eventually he got his chance to catch a wave, the professional getting him to stand up while holding him from behind. These professional surfers were amazing, I saw some surfing in with kids on their shoulders, some holding small kids in their arms. Their balance, strength and patience was greatly appreciated.

LB had a great time and got to surf a few more waves, my eyes filled with tears each time he came in.

Before he was done E-man went out too. E-man got to ride with the man himself, Izzy Paskowitz. We saw Izzy talking with his son before my son went out. It was emotional to watch them smile and interact amongst all these people who were her because of their their struggle to connect and ultimately their ability to bond in a unique way. Isn't it amazing what comes from difficulty when you add hope and creativity?

They got E-man on the board and paddled out, Izzy was able to catch a wave right away. E-man covered his ears, his go-to defense mechanism when overwhelmed. 

The second time around, they wiped out. E-man's head popped out of the water and he grabbed on to Izzy right away. 

They jumped back on the board and with the next wave Izzy got E-man to stand holding his hands out so he could experience the full effect with out fear. E-man did great and seemed to enjoy it.

On the last wave in we thanked Izzy for everything, shook his hand and got a few pictures. 

The event was worth the worry and the wait to get there. The boys had a great time and I think Martin and I got to see the boys do something I never would have dreamed of doing five years ago. It was certainly an emotional experience I'll never forget. 

The next two days we spent in Disneyland and California Adventure. It was so much fun to share the magic and excitement with the boys. Seeing the boys light up when they saw Woody, or cuddle up to Rapunzel made my heart want to burst with happiness. 

E-man also did great staying with us and listening to directions. He was independent as he didn't want to hold hands most of the time but he showed us that he's ready and capable of that independence.

LB by this time was not feeling the greatest, 

he got a fever the last day in the afternoon. Overall though he did pretty well. We had one meltdown moment, brought on by hunger, heat and exhaustion. The meltdown trifecta. With a little siesta for all of us we were able to get back to the park and have more fun.

We used the disability access card, a system designed to help those with special needs enjoy Disneyland. It was simple, we picked a ride we wanted to go on, found a kiosk and had all our cards scanned in and were given a time to go to the ride. We were able to get on the ride with minimal wait, it's kind of like a fast pass but available for every ride in the parks. Because we stayed in one of the Disney hotels we were able to get into California Adventure an hour early both days, which was awesome because there were hardly any lines and the boys got to ride some things twice in a row if they really liked it. Disneyland staff was overall very helpful and accommodating. Only one staff member at a kiosk desk had a little attitude initially but the second time we stopped by she was nicer. 

The favorite rides by far were the tea cups, the Cars Racers, and Goofy's Flying School.

There was no way we could have done all this on our own, my mother in law and niece were essential to the success of this trip. My niece was great at playing with the boys, cracking jokes and making coffee runs for the group. My mother in law was great at making sure everyone had water, snacks and sun block. She even stayed with the boys after bed time in the hotel so we could go run around the parks, a great perk in my book.

The Friday before the surfing event Martin had planned a dinner out at a nice restaurant to celebrate our upcoming tenth wedding anniversary. The food was amazing and we had a great time.

When I stand back and look at how far we have come in ten years, from marriage to pregnancies to diagnosis (x2!) to hope and love and struggle I can't help but be grateful. I'm scared too of what the future holds. But five years in I have hope. Not for a completely normal life for the boys. But a life of happiness, independence and purpose. 

If that's what just the last five years have shown me, I'm excited to see what the next five, ten and twenty will bring.

Our Village

I realize it has been a really long time since my last post.
I do think about it a lot though, so that counts right? There are moments I think of a great blog idea and then I'm immediately distracted by a flying Woody doll or someone trying to streak through the house naked. Most ideas just can't compete with a foggy mom brain.
The other day I was reading through a few Facebook pages I follow. Lots of parents were feeling burnt out, looking for help and hope.
I think the theme fits the season, with the holidays and interrupted routines, it's natural to feel stretched thin. And these aren't just special needs families I was reading about.
Each family has their own struggles to face.
A few months ago I was able to attend a breastfeeding training conference for work. During that time I got to meet so many great women. There were women working for WIC who had been young mothers themselves, a county nurse who made home visits for low income families, a pediatrician hoping to learn ways to help her patient's families, a midwife training for her lactation certification.
What struck me about all of these wonderful women is that every one of them described motherhood as hard. All of them felt the pressure from trying to juggle all that was on their plates.
I thought to myself,
"It's not just me! I'm not crazy!"
It got me to thinking about my little community, family and friends who help support us each in their own ways. People who help me feel less crazy (sometimes).
Over time our support community has grown as much as we have as a family. Family and friends have had to learn out how to help us just as much as we had to learn how to help ourselves and the boys.
Our village is always evolving, always improving and I am so very grateful.
Everyone has their own way of being supportive. In-laws that help out with watching the boys, my mom helps clean our house and bring us dinners already made. My sisters listen to me vent, other autism mamas make me laugh and let me cry, family and friends that will talk about Serial for days (if you haven't listened to the Serial podcast, consider it an assignment and get back to me), teachers and therapists who cry with you when your child utters a hard won word or draws an image of a cartoon character for the first time. Aunts that email articles about autism, family that mention a sensory toy they heard about, friends who ask how the boys are doing and really want to know.
All these people help, these seemingly minor actions collectively add up. It feels like a big hug sometimes, just when I need it. I think a lot of of the time people just want to be acknowledged in order to feel supported. They just want to feel like someone is saying
"Hey, I see you, I feel you and I'm here for you".
And that can really happen in so many ways.
What I'm starting to realize is that not a lot of people in our position have the support we do. Lots of special needs families end up isolated, without a safety net of people who care for them.
We really are fortunate to have all of you wonderful people in our lives. I'm consistently reminded of your love and support.
I wanted the last post for 2014 to be a thank you to those in our village who help and support us in big and small ways. With out you guys, this gig would be a lot tougher.
Thank you and I wish you all a happy and healthy new year.

Barfing Barracuda

Over the weekend we went to a play my brother in law was in. My sister in law watched the kids at her house so we could go (she had been to his show twice already). I was a little nervous because we hadn't been to their house since I was pregnant with E-man. Not knowing where he may try to escape from can be a little stressful. My in laws know us very well though and had everything on lock down with my sister in law on E-man and my 16 year old niece on Little Buddy. It's basically man to man defense when we are out and about. At home is more of a zone defense strategy, it works out pretty well. And thanks to our fantastic family we got to enjoy the play.
We got back and had dinner, the kids played a little longer and things started to wind down. The drive home is two and half hours, so we headed out a little early.
We were on a little windy road in the mountains, over looking the whole city with all the lights. I pointed it out to E-man (LB was already conked out at this point), he looked at it and smiled. Just as I was starting to think about how my favorite part of parenting is when you share something with your child and watch them discover something new, E-man puked.
Like exorcist style retching, all over himself, the car seat, the floor around him and the big toy pirate ship we brought for LB. My warm cozy feelings vanished, as we found ourselves in the middle of nowhere with a barf encrusted child. Just as he finished vomiting he sang the chorus of Heart's "Barracuda" that we had playing. Neither Martin or I had ever heard him sing the words. Hearing his little voice weakly sing "barracuuuda" right after puking was so dang cute we started laughing at the situation we found ourselves in.
We quickly came up with a plan, we pulled over, I wiped him down as best I could while Martin called his mom to see if we could come clean up more. Grandma to the rescue! She was home and helped us clean everything up when we got there and we spent the night.
What's even funnier is that earlier in the day I was feeling so proud that I had prepared so well for this trip.
Murphy's law of parenting #312: don't get too smug about your prep skills or your kid will barf and or poop their pants in a really inconvenient location.
Here's the thing though, getting through the weird parenting curve balls almost always make a great story you can laugh about later.
I'm all about the silver linings.

Kindergarten

E-man started kindergarten a couple days ago. I can't believe my oldest boy is already going to kindergarten! Sometimes when I'm hugging him I'm amazed that he was once a tiny baby I held in my arms. But they all grow up, right?
We had his IEP last April to determine his class placement. While we were not in agreement with the team about the classroom, we did agree on all the services and goals. The services include speech therapy twice a week, a one to one aide and a month of training for the aide from the school he currently receives therapy through. Since the meeting I have also talked to the teacher, she has experience with autistic kids and so far has been easy to contact and communicate with. The kindergarten he's attending is one for special needs kids on the more severe side. When we did a tour of all our options we saw this classroom and there was a wide range of disabilities. E-man is probably somewhere in the middle of  the kids in this class abilities-wise. And I'm not going to lie, this was a huge hit to my pride. Having a kid with special needs is hard. Having one in the lowest level abilities class kind of just smacks you in the face.
The hardest part of the whole process was that E-man had a psychological assessment that deemed him not only on the autism spectrum but also intellectually disabled (which the psychologist so helpfully pointed out was formerly known as "mentally retarded", I wanted to punch her face).
Now here's my gripe about this new label "intellectually disabled", the tests they use to determine IQ are all language based. E-man does not use language yet. He is not dumb. He just doesn't fit the mold for the tools they are measuring him with. It's extremely frustrating. I am trying my best to be objective when I think about it and not let myself sink into denial. However, anyone who spends a decent amount of time with E-man sees that he has a lot going on in his mind, he just hasn't shared it yet. It makes me think of that quote all over the internet:

"Everybody is a genius. But if you judge a fish on his ability to climb a tree, it will live it's whole life believing it is stupid"

E-man is definitely not stupid, when he wants something he figures out how to make it happen. I'm not saying he's a genius, he does have his limitations. But there is far more going on behind those bright eyes than we know right now.
The silver lining to this new label is that it's not forever.  As he learns and grows we are hoping that he will no longer fall under the category of intellectually disabled.
The other difficult part of the process was feeling like an inadequate advocate for him during the meetings. When I think back to it now I wish there were things I had said or pointed out at the time. It gets so overwhelming and intimidating. It was an eye opener in what to expect and how to prepare myself for meeting that will come for both E-man and Little Buddy in the future.
It was a learning experience at least.
My plan moving forward is to be on the school's ass to make sure IEP goals are being met and that expectations of E-man are high, no matter what labels he has. The hubby and I are discussing hiring a professional advocate to attend meetings with us to have an objective and knowledgable person on our side.  I'm hopeful for this year and feeling hesitant to trust the school system. We'll see how it goes and at the very least we will have better experience to fight LB's battles too.

My Dad

Growing up my Dad worked 6 days a week. He owned his own business with my Mom, restoring antique stoves and running an antique thrift shop.
If he wasn't in his shop working he'd be traveling all over the Bay Area doing service calls to fix stoves. He told me once the busiest time of year was the holidays because everyone needed their ovens to work so they could feed their families. My brother and I spent time with my Dad while he worked. We all took long trips to the scrap yard (I was in it for the pancake breakfast), helped move furniture and dusted the antiques in the store. In high school my Dad had to get a job at the city because the store wasn't doing as well.
Even when he got that job he continued the stove business without the store front.
The majority of my childhood memories of my Dad are of him working in his shop.
My whole life he has worked so hard to provide for my family. He always told me to pick a job that used my mind, not my hands. He just wanted better for his kids.
One time after getting home from his city job he sat down for a few minutes. Then he said "Ok I'm going to go work outside"
I asked "Don't you get tired of working?"
He looked at me like he was so glad one of his kids had finally asked this question.
He said "Yes. I do."
Then got up and went to work.

Happy Father's Day to my Dad, one of the hardest working men I know.

Lonely

Raising special needs children can be a lonely business.
My immediate family and friends are amazingly supportive and do their best to understand. But sometimes when you need to talk about really heavy stuff or just really gross stuff that autistic kids do it's hard to relate to people who don't live it.
Lots of times people will say "oh all kids do that". It is technically true in some cases and I completely understand the intent with telling a special needs parent something along those lines. People really want to make you feel better and they say it so you can feel like your kid is doing something a neurotypical kid does. 
The difference in an autistic child is that they may do that specific thing fifty times in an hour or have a really hard time transitioning or in the worst case scenario have a meltdown that becomes out of control. You see, the actual thing by itself isn't always terrible, it's just that this behavior is exacerbating a parents very deep feelings of stress. Depending on the day, the behavior can make you sad or mad, embarrassed or just hopeless. It can be the proverbial straw that broke the camels back. 
So when a person says all kids do that particular thing it basically shuts down any helpful conversation and downplays the serious emotions that accompany these situations. 
And I get it, it's hard to know what to say sometimes. It's just an example to illustrate how hard it can be to relate. It's really a sticky situation on both sides because no one wants to offend and I myself don't want to be overly sensitive. Knowing that people are usually good at heart and doing their hardest to be kind is understood. It's just the reality of our situation and it gets murky. 
My best friend has always been easy to talk to about the tough stuff. 
Late last year she moved out of state and left me missing my coffee buddy. She spent a lot of time with us and the boys and totally got it. Since she was a nurse it was ok to talk about scary or gross stuff because honestly, nursing can be both a lot of times. When she left a lot of emotional support left, support that you can't quite replicate over the phone. Over time I've started branching out a little in talking to other autism moms, doing a moms night out and having coffee with a few that live in my town. These women have been a lifeline of sorts, they deal with the same school districts, the same doctors and school psychologists and IEP teams. The insight, support and ideas are really invaluable. 
We also joined a special needs soccer team that E-man participates in on the weekends. Having activities in our community with "our people" is great, seeing kids and families of all abilities is in it's own way validating our lives and experiences. We really aren't alone.
The online autism community has also been helpful these past few months. In the same way that soccer validates my feelings, a mom on twitter getting excited that her kid read aloud or another mom who is lamenting a tough day makes me feel less alone and less ashamed that I get mad, sad, angry or frustrated with my kids. 
My friend leaving ended up opening me up to people and experiences I may have missed out on if she hadn't left me for the Big Apple.
It's a true blessing in disguise (and now I have a really good excuse to visit New York!).
It looks like my world is becoming a little less lonely and starting to feel a tiny bit bigger. 

The Boys

E-man and Little Buddy have been a handful lately. LB has graduated to this stage where he wants to throw everything. He especially loves forks, he'll gather up a few from the drawer when I am not looking and while running throw them up in the air to watch them fall. One night he was doing that and E-man found some tent poles he was running around with and I was worried Martin would come home to find me impaled to the wall. 
When the kids develop this off beat pattern with an object my job is to figure out a way we can make it a game or somehow direct the pattern of play into something that might happen in real life. Stuff like play eating with the forks, having a doll use the forks or anything really that won't injure him or anyone else is preferable. LB is having none of it, so when I take the forks away it's on to a new object to throw and the whole cycle begins again. It can be a real struggle to try to figure out what to do with these items to redirect his attention away from throwing them. 
On top of that LB has had some eye issues the past couple of months when he started crossing his right eye in. After taking him to two specialists the conclusion that was drawn is that his eye sight is fine but he needs to wear a patch on his left (good) eye to help strengthen his weaker eye. Thankfully it's only for 2-3 hours a day, but man that 2 hours (the most we've been able to get him to keep it on) is that longest evvveeeeeeeerrrrrrrr. However his tolerance of it is getting better, but I can't leave him alone with it. 
On the other hand, E-man is doing pretty well and has been fairly happy lately. The challenging thing that has come up with him is actually at preschool. While there he has an IA (instructional assistant), two times in the past month when the IA used the restroom E-man has tried to elope from the classroom. Thankfully he never made it much past the outside of the door (which opens up into a gated playground). At his last IEP meeting I let the team know I wanted to be notified of this behavior and I want it documented each time. After that meeting is when these two times occurred and it makes me wonder if they happened previously and I was just not told. I feel like I am learning a big lesson here. Things may go on that I will never find out about and if it is something I need or want to know I have to not shy away from making these needs known in the future. At that last IEP we discussed how E-man's strengths tend to be in the cognitive realm, which can be a double edged sword. He is smart, which obviously is good but it can make it tough to get him to ask or engage you in some way if he can figure out how to get what he wants on his own. With him I feel like I need to be two steps ahead in any situation. 
They are handfuls now but I am learning ways to help me deal with the stress and one big one is exercising. I know, I know, it's annoying to hear but it is very true. I didn't really realize the impact it had on my ability to cope until I was majorly slacking off and suddenly everyone seemed unbearably annoying. It was a good realizations and I have come to a few new conclusions about my health and well being I want to detail in another post. So until then I am doing burpees for my sanity.

Christmas

Christmas crept up on us this year, I picked up a bunch of lactation hours for December and the hubby was extra busy at work too. By the time Christmas rolled around I wasn't really excited about it. So what do you do to get in the holiday spirit? Get a tree, decorate it while cooking something delicious (beef soup that night) and listen to holiday music. 
That did the trick and the boys loved the tree, E-man helped test the lights and hang ornaments. Little Buddy ran around excitedly, inspecting ornaments but he lost interest pretty quickly. 
Christmas is a little strange for us because there is no way to know what the boys understand. For example, Santa might just be a big red dude who shows up at parties for them. E-man loves him though, his preschool teacher sent me pictures of him sitting on his lap all excited. LB hasn't shown much interest but it was the same with E-man a few years ago. I don't think we will go out of our way to sell the whole Santa idea anyway. For two kids who can be quite literal convincing them that Santa is real then later having to explain that he's not and that they can't tell other kids seems like it would just be confusing. So we will just enjoy the jolly man who likes to party.
We also did gifts a little differently this year. Instead of wrapping up everything we set it all up so that when they walked out of their rooms the living room had a bunch of cool stuff in it. To them a wrapped box doesn't mean much and neither of the boys find much excitement in unwrapping a gift. After setting it all up I videotaped them waking up and walking in the living room, it was adorable.
In addition to our Christmas at home there were three holiday gatherings we attended this year. Lots of effort was made by grandparents to E-man proof their houses. It was sooooo very much appreciated. It's always a lot of work to go to any get together with the kids but the extra security measures made it easier and more enjoyable to just hang out. 
The holidays seemed to be a hit this year and I really enjoyed the time off Martin and I had together. I'm hoping to keep up my blogging a little more in the future, thanks for sticking around and reading about our little family. Hope all of you have a wonderful 2014.

Escape

A few nights ago we were hanging out after dinner with the kids. 
I went to use the restroom, Little Buddy got upset that I left and started crying. Martin was consoling him in the hallway when E-man quietly slipped out the front door and into the night.
I came out into the hallway and took LB, Martin went to the back of the house. I noticed I couldn't hear E-man at all. I scanned all the rooms and couldn't find him. Starting to get nervous I went back to the front room and noticed the front door open the tiniest bit.
My heart dropped, running for the door I opened it, he wasn't on the porch. I screamed his name.
I stepped back in the house yelled for Martin and not waiting for a response I left LB by himself in the living room and sprinted outside. My first thought was the park near our house, he knows the general direction and that was the most likely place he would go. I ran into the front yard and onto the sidewalk, in my peripheral vision I saw a blur of orange, I turned and there he was. E-man in his red Avengers t-shirt, dark blue pants, barefoot in the middle of the street a few houses down. It was almost like he had a spotlight on him from the street lamp nearby. He was laughing and looking at his shadow on the ground. I called for him and he looked up, smiling. I ran for him, as I ran to get him he started running towards me. I scooped him up whispering his name and thanking God he was ok. I carried him all the way home.
When I got in the door LB was crying, Martin was still in the back of the house. Shaking, I told him what had happened. 
The whole rest of the night I couldn't take my eyes off E-man, I kept hugging and kissing him. Trying to explain to him that he had to stay home where it was safe. He would smile at me, hugging me back. After both kids went to bed I had a complete meltdown. It felt as if the old wound was ripped open again. It feels like we get to a certain point with them and something new happens that kicks us to the ground. I felt helpless and alone.  I think I felt even worse about it because I have been keeping up with the news story of the 13 year old autistic boy in New York who walked out of school and has not been found for going on 7 weeks now. For some reason this story has haunted me. So when E-man slipped out fear enveloped me even after he was safe at home. That night I had to keep reminding myself that he was ok, sleeping peacefully in his bed. The what-ifs were plaguing my mind. What if he had gotten farther, what if a car hit him, what if he had drowned, what if he had been taken by someone? I couldn't stop the negative thoughts. It bubbled up and I just cried and cried, Martin holding and comforting me. I was so tired, I AM so tired of worrying.  
I guess the good news is that over the years enough scar tissue has built up that when something reminds us yet again in a big way that our lives are different, the recovery time is faster. Let yourself feel bad for a little while, pick yourself up and start troubleshooting. I realized after the commotion that I had forgotten to lock the front door when I got home with the kids that afternoon, so when E-man tried the door he was able to get out. Since LB was having a meltdown, Martin couldn't hear him leave and was obviously occupied. This led us to ordering some door alarms, so now we have the welcoming sounds of a convenience store. Whatever works, right?
Doing some research I found a really great website that provides a tool kit for help in preventing an autistic child from wandering and what to do if an event like that occurs. It feels better to have some information handy, and it discussed figuring out why your child might wander. Some children are fascinated by water or street signs and go looking for them. E-man loves parks and he hates to hear LB crying, so put that together with an unlocked door and he's off. 
In total he was gone for maybe 5 minutes, it could have been much worse. I have to keep telling myself that now at least we can work on prevention and vigilance. To use it as a lesson and build a plan that is tailored to keeping him safe. But the worry is there, it will always be there.  

Hodge Podge

It has been decided E-man will take a bus from his preschool class to therapy three times a week.
Oh lord help me.
I have never really wanted either of the boys to take the bus. Since they do not really answer questions I can't ask them how the ride went or you know, "did the bus driver seem drunk?" type of questions. Although my mother in law pointed out that E-man can't tell us what is happening at school either, so that line of thinking really is not very logical. For me worrying usually wins over logic (I am working on it though).
When we started preschool last year I was available to do all the driving. It was pretty simple because Little Buddy had therapy in home and preschool wasn't that far from our house. This year everybody is in a different town at different times of day. Preschool days I spend just over three hours in the car going back and forth. 
To make it more complicated I started training to be a lactation consultant and in order to be certified you have to do so many hours of breast feeding education. Obviously when I'm driving all over town, getting training hours can be difficult. 
Deciding that E-man would take the bus was really tough. I feel like I'm having to decide between what is good for my kids and what is good for my career. 
To be honest it sucks.
I feel selfish about the decision. But at the same time I am pursuing a career opportunity that I am excited about and feel that I would be good at doing. There has to be a better balance between my mommy self and myself as an individual. Part of that will have to be accepting help where available and hoping E-man transitions well. 
I did my homework on this option as well, I spoke to a few moms and the staff at the therapy school about the bus and got a lot of positive feedback. So that is where we are at as of right now, I turned in the paper work so in about two weeks he will start riding the bus. So I will have plenty of time to continue doubting myself.
In other news, I had a meeting with the staff at the therapy school and the subject of kindergarten came up. At this point E-man is minimally verbal, which for him means he uses words but they are almost always prompted. That will have an effect on what kind of placement will be available to him next year. The options as I understand them are 1) Regular Kindergarten placement most likely with an aide 2) Special Day Program 3) Homeschooling Program with a mix of therapy during the week. Our goal for E-man is to get him ready for option 1, which will include a serious push for more language from him. It can be hard though when it feels like the harder you push the more he resists. I really would rather he not go to a special day program, I have heard a lot of not so great things about them and I am not sure it would be appropriate for his needs. I can't completely rule it out until I have gone in to see it for myself, so that is the plan once the school district allows us to do that. Option 3 is interesting to me but I have to learn a little more about the programs in our area and how that would work for E-man and our schedule. So it's kind of a lot to process at the moment. Little Buddy is still chugging along doing therapy, no big changes in placement or IEP meetings to worry about until he turns 4 years old. We are also juggling the ever changing laws on what insurance covers, the state covers and the school district covers therapy-wise. Right now the state is covering co-pays  which for each kid is $30, so $60 total per day. It's a long story but we will be paying our co-pays starting next year, it's just an extra headache figuring out what exactly each entity is doing or planning on doing, especially when they are not always clear on it themselves! 
Anyway, that's our lives right now. It feels like a lot of juggling when you throw in trying to keep up on house chores and working out regularly. Honestly, there have been many days in the past few weeks I feel like I am barely keeping my head above water.  So that is the reason for my hodge podge post today, I needed to get it out of my head. Blogging is almost like having a pensieve, though not as cool. Yes I just made a Harry Potter reference. You're welcome.

The Movies

A few weekends ago we took the boys out to their first movie at a movie theater. It was a sensory friendly showing of Monsters University, meaning they turned up the lights a little and turned down the sound. Kids who needed to move around were allowed to do that, parents trailing after them. Nobody got upset when a kid cried or yelled out, when E-man got antsy towards the end and groaned rather loudly, other parents just smiled. 
There was a group there together with several autistic kids, the coordinator of the group helping the other parents and talking with the staff at the theater. She passed a Mom who was following her son on the stairs, the Mom apologized that her son was in the way. The coordinator told her, 
"There are no sorries here".
I overheard this and smiled. 
Another Mom was walking around with her son who looked to be around 5 years old. He scooted into our aisle in front of me, I greeted him and he looked back with a little glimmer in his eye. His Mom and I started to chat. She confided he was nonverbal and his comprehension wasn't that great, to which I replied,
"I know how you feel".
"Thank you", she said, turning to catch her son.
The boys had so much fun, they wiggled around a little and ate a ton of snacks. It was such a thrill to watch their little faces light up with excitement.
You know what I felt in that theater?
Love.
I felt the love of all those parents and grandparents and friends who were there to have their child experience something many of us take for granted. A simple morning at the movies. 
I felt the tools we use everyday to help guide and mold the boys come to fruition. My pride for E-man and Little Buddy swelled so much I felt I might burst. 
It seemed fitting that the movie we picked (spoiler alert!) was about a character that everyone underestimated, but ultimately went a different path and was successful.
It made me so happy to be there, I welled up a couple times.
Here was a place for my boys to be exactly who they are, no explanation, no stares, no pity. Just acceptance. A year ago this kind of family outing was just a dream, something we would get to eventually. And here was the day, we made it. And it felt good.
I think about all the dreams I have for my boys, things far off in the future. Will they get there? Will they have the same dreams? 
I wanted to clarify my last blog entry. In that post I oversimplified how to be happy.  I don't suffer from chronic depression, so saying being happy is as easy as deciding to be sounds naive. I realize its not that easy, there are days I'm so overwhelmed I don't feel like looking for happiness. But I try my best most days, looking for bright things to at least dull the worry of being a special needs parent. 
That day at the movies gave me hope. 
Hope that when the boys decide what it is they want to do in life they will work hard and achieve it. I also hope they know Martin and I will do anything for them, support, guide, push, love, dream for them. These boys are my heart, I didn't think it could get bigger. What I'm learning is that as they grow and change my heart does too, right along with them.

Time Frames

A few days ago was the third anniversary of when E-man was diagnosed with autism. Two weeks before that was Little Buddy's third birthday. Three years ago we were overwhelmed. A second baby and autism! I look back now and realize how far we've come physically, emotionally, mentally and spiritually. 
Autism was the catalyst for us to get healthy, invest in our marriage even more deeply and rely on loved ones more than we had ever before.
Martin and I are going to be celebrating eight years of marriage soon. Eight years ago I couldn't have guessed we would be here, so far from where we grew up and raising two special needs children.
Of course there were and will continue to be bumps in the road. What has helped me immensely is deciding to throw out the mental timetable I had for certain things.
Hoping the boys would talk by the time they were a certain age, be fully potty trained by a certain date all puts added pressure on an already stressful situation. With three years under my belt, I now know we can have goals to work on but setting them in time frames that may be unrealistic is unfair to both us and our children. Don't get me wrong, they have both made tremendous progress with the help of therapy. My focus now is that we are consistent in working on goals so they will happen eventually, without  so much stressing on the "when". 

Throwing out the time frame also addresses the "I'll be happy when" syndrome. The "I'll  be happy when I weigh X", "I'll be happy when I make X amount of money", "I'll be happy when the Sharks finally win the Stanley Cup" type of thing. I've realized I'd rather be happy, grateful and amazed at my life now. 
Having goals is great, but at the expense of not being happy until they are accomplished? Not so great. 
So our little family will just keep plugging away at our goals, happy, proud and thankful for each other.
Why wait?

Mother's Day

I don't think I truly appreciated my Mom until I had my kids. It didn't kick in right away because I was so overwhelmed with my newborn. After things calmed down I started to realize all the struggles I was having, my Mom had too. 
What was shocking to me was the love. You expect to love your children, you're told it's a love like no other. When you finally experience it, it is so intense it overtakes you. Realizing that my Mom feels that way about me was like a light bulb going on. 
When I was little I felt like my Mom knew everything, I felt safe, warm and loved with her. She would pack me and my brother a lunch to eat when we played outside. She showed me how to make mud pies with real mud. 
She was everything.
In junior high I was bullied and one day after school I was really upset.
She took me to out to Foster's Freeze to talk about it. I don't remember what we said but I remember feeling better after.
High school was tough, by then I thought I knew it all. We were still close but I was quite sassy and ran my mouth a bit. 
A mother-daughter relationship can be so complex. It was love-hate around that time, it was hard sometimes figuring out how to be together. As I got older I realized I wasn't right all the time. It starting dawning on me that she had good advice and my best interest at heart.
In college I decided to move out with Martin and when I told her she cried. 
She said she would miss me. My first night out of my parent's house Martin was out of town. 
I told my Mom and she came by to chat and brought food. When she left I cried because it turned out I missed her too.
Bringing up my children has shed a light on what she sees when she looks at me, the worrying, caring and frustration she feels for me. I get it now. 
What I want to say is thank you Mom. Thank you for everything, and I mean everything. Every wiped butt, every nose cleaned, every tear dabbed, every hug, every kiss, every talk, every laugh, every fight, every phone call. EVERY SINGLE THING.  I appreciate you and I love you.

Happy Mother's Day! 

As time flies

The month of February has been a little kinder to us than January. I realized the other day that's its been a year now that Little Buddy was diagnosed with autism.

What a year it's been! 

LB has made so many gains with over a year of therapy under his belt. 

The beginning was rough for him and the focus was on him tolerating being with someone other than me for a short period of time. 

It was baby steps at the beginning, it started with just an hour (with me in the room). I slowly faded out and the length of time increased. 

From there they worked on play and social skills and back and forth games. As the hours increase his therapy has become more complex.

Currently he is receiving five hours a day of in home therapy. The afternoon hours were just added a couple weeks ago so that has been an adjustment.

When I think back to a year ago, his progress is amazing. Eye contact has improved, answering to his name, pointing at desired objects with consistency, acknowledging other people a bit more (although he's not too friendly yet) and the most exciting of all is that he is starting to talk! 

Of course his most often used word is "no", he also says "go", "side" (for outside), "Mama", "baby" and "mo" (for more). His verbal imitation is picking up too. 

The language is starting to click for him. With that said, he does get very frustrated when he can't communicate what he wants. 

The other night I had a friend over and he was crying and yelling, obviously upset about something.

I tried every trick, his favorite snacks, a drink, games, books and just holding him. None of it worked. 

As I was trying not to have a breakdown myself my friend pointed out that even though it's hard for him it's probably a good thing that he's understanding that he needs to communicate his needs to me.

It sounds strange but it's true.

When we were very first meeting with the clinical staff of the school we were warned that at some point tantrums might start happening. This is because the kids have made the connection that information has to be communicated to a person but they can lack the language to convey the message. As language picks up the tantrums usually improve. 

So even though I was about ready to rip my own hair out I could see why the meltdown was really a stepping stone towards better communication. 

Thinking about the last year and how quickly it has gone by makes me want to slow things down. I get so caught up thinking about the future, I often forget to appreciate things now. The bigger LB gets the more it hits me that I won't have another two and half year old running around the house again  (on a side note, I told Martin I had a dream that we had a third baby. His response "Ok, ok I'll go get the snippety snip").

So I'm trying to appreciate them because it goes so fast. 

Parents of older kids have told me to enjoy it. When you think about it people are only children for a very small period of time, being mindful and present in their growth  can be a challenge. 

To that end I do want to document their quirks with pictures and descriptions in some kind of album.

I never kept up with their baby books. In all honestly when I couldn't fill out the "milestones" sections with certainty that went out the window. 

For a time I didn't put a lot of thought into it. Lately it feels like I need to record what they are like. LB likes to nuzzle my face with his face. Resting his cheek against my cheek, or pushing his forehead to mine, giggling, sometimes giving me kisses too. He's done this since he was very little. I know one day he won't be so affectionate and I don't want to forget these sweet moments. E-man is very interested in helping in the kitchen, a fact I want to have photographic evidence of for when he's older. After all, these small moments make up our lives. It is becoming apparent to me that there is no way I can remember it all. The best I can do is to take pictures and make notes to pore over when the boys are big and smelly. 

Rough Start

Leading up to the new year we had a lot of different illnesses running around the house. Every week it was some new infectious bug that kept the kids out of school and Martin and I exhausted. That added in with the regular holiday stress we were tired.Shortly after the New Year Martin's Grandma passed away. This was and is very difficult. His Grandma felt like the glue that held his family together through thick and thin. We were devastated. 
There has also been a change in my family that makes me incredibly sad, I can't go into detail because I don't want to air anyone's dirty laundry. Nevertheless it's something I worry about. 
All of these family troubles have made it a rough start for this year.
I worry for people, more than I probably should. I want to fix problems for people that I can't and shouldn't. This is a hard lesson for me and one I'm still trying to learn. 
I've got problems of my own to focus on but I can't help aching for the people I love when they are struggling. It's easy to let it all get overwhelming. I'm really not sure what the point of this post is today. I just needed to get it out of me. I don't have an easy answer for any of it. 
All I have for now is hope that things get brighter, that the people I love will get through the darkness. 
I hope, I hope, I hope.

Gratitude

Having my kids has changed me as a person. It seems pretty common for most parents, whatever personality your child brings to the table molds the outlook you have on life and people around you. 
What has been inspiring are the changes that have happened to the people around us because of our children. Family and friends have told me learning about autism and knowing E-man and Little Buddy have given them a new perspective and that it has changed their actions. 
My 18 year old niece told me she went to a friend's party awhile ago. This friend had a special needs family member in his teens as well. He was a little awkward but eager to talk to people and my niece sat down and had a conversation with him. She told me later she thought about when E-man was older and trying to talk to people how she would want them to treat him. That she hoped a girl wouldn't shoot him down immediately because he was different. 
My sister said she doesn't judge parents who have kids that might act a little funny in public. Now she understands sometimes there is more to the story than what you see at a check out lane at Target. Not only has she had this realization she defends those kids to others not so accepting. 
Their grandparents have also changed. Knowing the kids' unique likes and dislikes, have gone out of their way to provide special things and time to spend with them. 
Sometimes it feels like I talk endlessly about their autism because I'm almost afraid family will forget. Obviously that isn't going to happen but it's this weird anxiety that I have. What's awesome is seeing that what I have said wasn't in vain. Our families understand when we have to take Little Buddy to a quieter location when things get loud. There have even been times I am so stressed out at a social gathering a quick thinking grandparent guides me in what to do, suggesting something I told them worked previously. People are listening, more than I thought. 
It means so much to me that not only are my children loved and accepted but fully embraced. Their oddness is OK.  Not every family facing similar challenges has the support we do. It makes me feel so lucky, so grateful to know my friends and family are listening, hoping, praying and loving us and the boys. I just want to say thank you, thank you, thank you.

Stressing Out

Things have been going fairly well around here. We were a bit nervous a few weeks ago because E-man's IEP was coming up. Typically to continue with the same program (basically justify the school district funding) the kids have to meet 80% of their goals. While E-man has been doing well in many areas, language continues to be a struggle and he wasn't quite meeting the 80% mark. Through some stroke of luck they approved the funding anyway and we will continue with the program. It was such a relief! 


The team we work with really cares about E-man and Little Buddy and are constantly tailoring lessons to meet their needs. We have great communication with them and developed a friendly rapport. It's like the dream team of autism! 
Now we are contending with insurance. Legislation was passed that requires insurance companies to cover autism therapy. This all great, especially for people in crappy school districts or counties that aren't helpful. For us it means jumping a lot of hoops in order to continue therapy. 


We had just started the process of getting the paper work going with our insurance when we found out my husband's company is switching insurance providers. After eight damn years this place decides to change? It must be some kind of karmic twist of fate because really we need more aggravation right? 
Anyway, it looks like we will be switching to Kaiser. 
And of course the kids have to go through a "rediagnosis" process so Kaiser can determine if they qualify for ABA therapy. You know because having a diagnosis from the MIND Institute of UC Davis, a leader in autism research and treatments, isn't good enough. 
Oh! And just to spice things up in May of 2013 the DSM (Diagnostic and Statistical Manual)  is being updated with new and "improved" qualifiers for autism diagnosis. 


UNIVERSE I AM DONE!


I'm not sure what else could be thrown in to stress us out but I can't exclude a natural disaster. 
So now we play the waiting game because we don't switch to Kaiser until January 1st. 
I am stressing out. I'm tired, I'm worn thin and this is just the beginning. Sometimes it's overwhelming what we have to do in order to obtain the best for our kids. Sometimes I wish it were easier. So I'm letting myself be upset and stressed out today. Tomorrow I'll rein it in and keep going. Thanks for listening. 

Four Years Old

Wow time really does fly when you have kids! Today E-man is 4 years old, I was so excited this morning it felt almost like it was my birthday. We made him chocolate chip waffles for breakfast and later today he'll have a little birthday party at school with his friends.
Sometimes it is still weird to me that I am a Mom and in charge of this little guy's life. It feels like I have been a parent forever and at the same time it feels like I just started yesterday. In honor of E-man's birthday I want to write a list of what he has taught me so far about being a mom, a person and about life. I think this list will grow exponentially, but here are the highlights.

1. Strength
I think most people don't realize their strength or potential until they are tested or met with a challenge.
E-man is challenged everyday in the therapy he does at school, to help him reach his full potential. When I start to feel overwhelmed with kid stuff, autism stuff, or life stuff I think about him and the fact that he keeps going. He has learned so much and if he can persevere, so can I.

2. No Judgement
Before having kids I was sometimes judgmental about how parents handled situations with their kids. Now I know what it is like to be stared at when your kid is having a meltdown or acting kind of funny in public. Nowadays when I see or hear a kid in public having an issue instead of thinking "Why does that parent let the kid get away with acting like that?" I think "Wow I hope that parent is ok and they can get through it".
I understand now how hard it is so I want to be graceful to others when they are having a hard time.

3. Hope
When E-man was diagnosed with autism it felt like there was no hope, no future and things were bleak. I can say we are very much past that stage and feel so much hope for his and Little Buddy's happiness and abilities in the future. It takes hard work but all things are possible when you let hope take a place in your heart.

4. Acceptance
Sometimes things don't go the way you planned or had dreamt. What I have learned is that through the challenges you can get to a point of acceptance and that's really when the fun starts. Once you can get over the previous plan you had mapped out in your head, your mind starts a new path, a new road to discovering what is important, what is worthy and what will still fulfill you.

5. Appreciation
I think having kids has taught me to appreciate what you have within personal relationships instead of material things. Spending time with people is really a priority lately. I think that is because time has become a hot commodity. With work, school and regular house errands to do it can be hard to squeeze in quality time with people you love. I try to make as much time as I can in our schedule and even then it doesn't feel like enough. However, I appreciate every get together and time spent with great people.

6. Balance
Balancing being a wife, mother, sister and friend is a challenge all by itself. I do not proclaim to be good about it yet but it is something I have realized is a worthy goal to attain. I need time for all aspects of my life in order for the whole to be happy. This is still a work in progress.

7. Love
I love love love my kids and they love me back. It's such a deep, primal feeling of protectiveness and nurturing and I was surprised at the intensity of it all when they came into this world. That love is the driving force in my endeavors to build them up to be good, kind, strong, productive people. I now totally understand the term "Mama bear" because it feels that instinctual and natural.

8. Joy
I have learned to find joy in small things, when E-man requests to be picked up spontaneously instead of being prompted. When he actively engages with me in play time.  His laugh and spirit give me so much joy, it's immeasurable.

9. Family
Our families have been so supportive and helpful through all of this process. It would be difficult to manage without the conversations, tips, acceptance and love we receive from everyone in our circle. I feel blessed to have my family and to have married into a family that loves us and our children unconditionally.

10. Marriage
Marriage is so key to all of these things. I can truly say my hubby makes my life so great. To the basics of being able to stay at home with the kids because he works, to the laughter we share at 6 in the morning dancing around the kitchen making breakfast, he is vital in making this work. I've learned what we can endure as a couple, that we can cry for a bit then tell a joke to break the tension. Our marriage is strong and has a good foundation, kids test that foundation in a way that you can't predict.

I know there will be more to add to this list as time goes on, as new challenges and things come our way there are more lessons to be learned. Even if they are hard, I am glad to know that I will one day appreciate them as important tools in learning about life.

Happy Birthday E-man!!

Family Vacation

This last weekend we took the kids on a family vacation that included a family reunion at a family member's house at Lake Shasta. To be honest with you when I heard about the reunion plan a few months ago I did not want to go. The reason being that it made me super nervous to have E-man so close to water for an extended period of time at an unknown location. Actually it was more like panic-inducing anxiety instead of just nervousness.  As discussed in earlier posts, E-man can be an escape artist and we are vigilant about keeping tabs on him at all times. He also loves playing in water so escaping to go play in water would be a huge draw for him, coupled with his inability to swim this would be a disaster. 

So when we heard about the reunion at first I pleaded with Martin to let me just stay home with the kids, working the angle that he could have a kid free vacation with his family. He wasn't buying it. Then I thought, well maybe I could bring one of my teenage nieces with us to help watch the kids. I was talking to my sister in law about it and while she understood my anxiety she assured me that there would probably be enough people there to help, but if I wanted to bring a niece she would understand. 

It was starting to dawn on me that I was probably over reacting. 

In another discussion with a straight shooting friend of mine that will never sugar coat anything, I brought up the vacation and my concerns. Basically she told me not to be a shut in and that I still had to live my life and provide the boys with new experiences. 

That conversation was a big eye opener, I realized I was making it about me and my anxiety about the boys when I should be trouble shooting ways to make it work. 

That changed my mindset a bit and Martin and I found out the layout of the house, brought some things of our own to E-man proof the house as much as we could. This included bringing a baby gate for the patio, safety door knob covers for our room and a baby monitor. 

We planned as much as we could ahead of time. 

It turned out to be a great trip. We got there and set up the safety devices and with A LOT of help from our family were able to keep an eye on E-man and Little Buddy. 

We took them out on a speed boat, a patio boat and out swimming on the lake. E-man even got to ride on a quad for the first time. They both did really well in the water and by the end of the weekend E-man was able to float in the water in his life jacket by himself, twirling in the water and attempting to swim towards us. 

There were moments of stress but I think that's pretty typical vacationing with two little kids. It was also nice meeting and talking with family members on Martin's side of the family.

What I've been realizing with E-man is that what I expect and what actually occur have not been exactly the same. I haven't been expecting things to go as well as they have, thinking I'm just being realistic. Really I'm being pessimistic and short changing the boys in the mean time. I think between potty training, better food habits and this vacation I'm starting to learn that I need to give both the boys more credit in their ability but also in the ability of me and my husband to handle difficult situations. 

My goal now is to try to be more mindful of how my thoughts and anxieties might help or limit the boys in their experiences, because really my job is to teach them about life. How can I do that if I don't allow them to experience new situations? 

It's funny how teaching them means teaching myself first, realizing that I'm learning as many things from them as they are from me. It's actually pretty amazing.

Food Ninja

Lately I've had to become a food ninja in order to get a well balanced diet into both boys. E-man of course prefers cheese and carbs (a boy after my own heart) and Little Buddy would be content to eat chips and fruit all day if allowed. 
Just this week E-man did a project at school where they taped pictures of their favorite foods on a big poster paper. The foods on his? Cheese, wedding cake (he hasn't been to a wedding but he does love cake), chocolate bars, cookies and a banana. One measly piece of fruit in the buffet of junk. I found it both amusing and disappointing. Kids with autism are usually picky eaters. It has a lot to do with sensory issues that they deal with, the texture, smell and look of food that they experience can be much different that what all us neurotypicals experience.
We were slacking for awhile on improving their diets and it felt like we were cycling through the same 3-4 meals. 
One day we went out to eat and found out the boys will eat chicken strips. I know, what kid doesn't like a chicken strip? Well E-man didn't for a long time and preferred chicken of the nugget variety. So this was pretty exciting.
Another time I bought one of those pre-cooked chickens at Costco and both the boys ate the legs, even better! At least it was healthier than fried chicken bits. So I started baking drumsticks and most of the time they actually eat them. When E-man was around 1 year old he liked sausages and we were sad when he started to refuse those too. Recently we gave them another go, italian turkey sausages were a hit! Ground turkey we had to work a little harder on, we basically bribed him with tortilla chips. 
As you can see veggies are not included so far in the list of new stuff they are eating. Usually when any kind of green food is on their plate, it gets thrown (Little buddy) or ignored (E-man). I learned a way to trick them into eating green veggies from a very smart teacher at their school. Basically you cut tiny bits of broccoli and put it in pasta, that way they get used to seeing green in their food. Then slowly make the broccoli pieces bigger. It's very simple, I wish I had known of it sooner! It totally worked too, E-man at first was skeptical but was hungry enough to try it (another tactic of the food ninja, starve them for a few hours so that they are just grateful to be eating). Little buddy didn't even hesitate and had two servings. Success! 
I was actually a picky eater but my Mom just kept serving me what everybody else was eating. I hated zucchini, tomatoes and one particular dish she called ghoulash (which has no resemblance to actual ghoulash). After awhile I got curious about the foods I had previously shunned. Now I like most things and would never be called a picky eater.
I'm hoping by using tactics that I learn from all different areas of my life I can get the boys to eat a healthy diet. If any of you have sneaky tricks for your picky eaters, I'd love to hear them.
Bon appetit!