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.