We are in a high "train" cycle right now, and decided to pluck down some money and take an authentic steam train round trip from Carson City to Virginia City - really Mound House to Virginia City, but, you know, that is just an inconvenient detail. It's about a 90 minute ride up the mountains and about 80 minutes back. You spend around three hours in Virginia City, which is just over 6,000 feet. Virginia City was once a big time town with lots of colorful old west history. Now it's mostly shops that cater to summer tourists and the like, like us! It was fun day though. And we will probably do it again sometime.
It's called the V&T Railway. Nice people. Nice day. Met some nice people on the ride up and back as well. If in Northern Nevada, it's an activity you should look into. I personally loved the sound of the train as it chugged up the mountain. Reminded me of all the old western movies I saw on television as a kid.
We are on our annual road tripping odyssey to Reno, Nevada to visit family and friends. Jill was born and raised in Reno, as was her mom. We've been making the drive up since Nicholas was three months old. Nicholas and Elena love coming up to Reno and this year were especially excited to be making the trip. We've been here for a few days already and have other photos to share that will be posted on an upcoming post. However; today we are able to make a brief invasion to my brother-in-law Vince's new tattoo shop - Vintage Ink.
Uncle Vince is a great guy and has been a very strong supporter of our efforts with Nicholas and Elena. It truly does take a village to raise and foster children, autistic or neurotypical, and even though he and a lot of our loved ones live five hundred miles northwest of us, they are indeed a vital part of our "village." He wanted us to drop by his new shop while we were here and today was a good day to do it. It was also his birthday which made it even better. Nicholas and Elena felt very comfortable there, and immediately made themselves at home.
Everyone who was there at the shop today was great and kind and really patient, even the two clients who waited while we invaded his shop. There are a lot of good souls in the world, from all walks of life. And days like today are a great reminder that beneath it all, we truly are One.
So next time you find yourself in Reno, stop by Vintage Ink, and ask for "Uncle Vince." Tell him Nicholas and Elena sent you.
Of course, before leaving, they just had to get a little inked. Nothing permanent, this time. They are only seven and five, after all.
She knew exactly what to do
She was shaking with excitement
Settling in to get her "rose"
Vince suggested a unicorn but Nicholas asked for a tornado
So we
trekked off to Disneyland yesterday. It was a kind of a surprise - a what-the-heck-let's-do-it-cuz-we-can trip. It was a very long and stressful school year and we were all in need of something fun. We are blessed to be able to go there as much as we do.
Knowing it was summer hours and crowds we thought,
"this time maybe we'll see if we should use the autism-fastpass-thing." We haven't used it but one time, and then it was only for one ride but we are a different family now than we were then - more complicated - and we didn't have an easy time getting it that first time. They were sort of...not very Disney nice about it, telling us it was not a "cut the line card" So we've been reluctant to try to do it again. Not worth the hassle. However; this time, once we got past the security baggage check and saw the many really long lines just to enter the park, and Elena started walking
around on all fours like a crab while waiting in one of those lines, we decided we were
definitely going to see about getting it.
We brought paperwork to prove we needed one,
which they immediately told us we didn't need to bring. They were essentially going to make the judgement based on a discussion
we were about to have with a guest services person. We got called forward for the discussion and it was just me and Nicholas as Jill had taken Elena to the bathroom.
When I said, "well, uh...we have
two, and they're autistic." The guest services person looked around like, "Okay, and I only see...one...?" when Elena walked up with Jill. And right when she asks, "And what are your
concerns?" Elena starts licking and biting the counter. Now if
we can only get her to do that on cue with complete strangers we can
rent her out to those ultra-wealthy "1%" families who take special needs
people with them to Disneyland and Disneyworld so they don't have to
wait in long lines. (read about it here)
Actually, having that special "Guest
Assistance" pass allowed us to have a very fun and memorable day, which
meant we ate more meals and bought more Disney crap than ever before - thus making them
more money - while getting us on more attractions than we've ever have
been able to go on.
Even with that pass, it was still hard on Elena on
some of those lines - with that amount of people, and the noise and the
claustrophobic environment, she was out of sorts at times. It's not a
"cut the line" pass, especially the cues of popular attractions with FastPass, so there is
waiting involved, only it's shorter. Which means Elena only touches five
strangers butts in line instead of forty.
25% great + 65% good + 7% okay + 3% percent not good at all = 100% successful day.
screen capture from video of Nicholas' award ceremony
Here are some end-of-the-school-year pics and videos.
This past week marked the end of an era in our life. Elena has completed her preschool years and will be entering kindergarten in the Fall. I have been very involved with all that we've needed to do to get her to this point. In a very real sense, it has been my "job" and, to some extent, has become my identity. Not only with her, but with Nicholas prior as well. We are in a time of transition.
I am in a time of transition.
Saying "cheese" waiting for the last bus
To be honest, I don't know what I am feeling as I write this, other than frustration that I am not able to write what I am feeling. And I need to. This is either my fourth or fifth attempt trying to put something down on virtual paper. Could be more. I lost count.
Life gets busier now for a few months. Summer tends to be filled with more things to do and less time to do them. Less time for blogging but more time for swimming. Maybe more time for massage - I hope. I am a certified massage therapist after all. Everyone is at home for a few weeks, then ESY begins (What's this?) in about a month, and then another few weeks at home and then the school year begins - second grade for Nicholas and kindergarten for Elena.
I am rambling.
I am rambling because I am finding it difficult to pinpoint my feelings still. The past seven years of being the primary day time caregiver during the school year to Nicholas and Elena has ended, in a sense. Now that Elena will be in full-day kindergarten I won't necessarily be spending the entire day or most of the day with her anymore. Preschool was only a little over two hours - not much alone time in light of their condition. Considering the number of times I had to drive her in this year due to LAUSD's bus issues because of severe budget cuts, it was frequently less than two hours. I essentially spent most of the day with her, and when Nicholas came home, with both.
Of the seven years, the first two years were just him. Then for two years it was the both of them, without the autism diagnosis yet so I was going out of my head a lot. Then it was a little over one year of him in preschool and her at pre-preschool. Then for two years of him at ful -- screw it! I am forgetting the details!! Seriously! I am. I am because they are not important. What is important is that it's over. And for kids who thrive in structure, benefit from routine and struggle with transitions, special needs kids like them do nothing but transitions, do nothing but deal with change of routine and do nothing but rebuild structure over and over again.
The "Math Award"
I'm...still struggling to write this. Why? I don't know. I don't. I just don't.
That part of our journey has ended. Mr. Thomas, Ms. Powers, Ms Lennon, Teacher Esme, and Mr. Joe did wonders for our kids. As did their many class room aides! As did their service providers - OT, Speech and Adaptive P.E. - particularly Elena's clinic OTs, Teacher Maggie and Ms Behnaze. Miracle workers, all of them. We said good-bye to them this week, not all of them personally, but all of them in spirit, as a collective of good souls who gave us our kids and got them ready to move forward to the next level, and gave us, as a family, the chance to progress and grow.
We have learned to say good-bye. We don't do it very well as it is sad to say, but it is fitting, so we do. And we have learned to say thank you. We always say thank you. Yes! Thank you! Thank you! Thank you! Thank you for giving us hope.
Thank you for giving us HOPE.
I think this is done now. I still don't know if I said what I intended to say. But maybe I've said enough here, for now. And the words I can't express are meant to stay inside me, in my heart, for me to know, and for only me to know.
I am going to miss her. And him, too - the whole era of
this...surprise twist of fate to my life that forever changed who I am
and what I know and feel and understand of the world and the universe.
Here is Elena, during one of her two hour intensive therapy sessions. This was taken by Sheila, her therapist, who you hear leading Elena along. She discovered that Elena likes to watch herself on the iPad, and has incorporated recording her during parts of their session to later use a motivator to meet certain daily goals. It has proven effective, and has given me an intimate glimpse into the world of my daughter.
A few words come to mind as I watch this:
Courage
Patience
Struggle
Frustration
Triumph
Special
As her parent, there are moments in this that are difficult to watch, especially when she struggles. Again, when you envision having children of your own, you don't envision the difficulties of a special needs child. Even with as much inner work I have done to fully accept, move forward and unconditionally love my children like nothing else on earth, it is, at times, still difficult to release myself to the attachment of what I envisioned and what is reality. As her parent, there are also moments in this that are strikingly beautiful to watch as well. Being a parent to an autistic child brings into your life a set of circumstances I doubt anybody planning, hoping to be a parent imagines having to live. How can one imagine? It is such a unique experience.
There is no good or bad. No right or wrong. There's just Elena. There's just Nicholas. There's just Us. And if you've watched this, there's now You, too. You know. You are aware. And together, if you choose, We take it from here, one moment at a time.
