Dx: Beautiful Baby Girl

In the last few days, Ellie was diagnosed with ASD. This diagnosis came very recently and only after an evaluation by a Developmental Pediatrician and after two different tests administered by two different qualified people at SARRC. As you can imagine, we are trying to cope with this news...and it's been very hard- emotionally, physically, mentally, on our marriage, on our son, etc. 

I can't speak for Mike, but the last 6 weeks have been some of the hardest in my life. And I honestly don't think we even know hard times yet. The amount of grief I feel is immeasurable. There are many reasons for this, the loss of expectations, dreams, etc and the level of ignorance I feel about what I know and how to help my daughter. But more than what I'm dealing with in my own head and in my own home...the things people have to say are...hurtful. 

I can't keep track of how many people have already told us we're wrong, the doctor is wrong, Ellie's behaviors are simply because she's two, she'll grow out of it, the diagnosis isn't valid because she's too young, she's fine, and on and on. 

And ya know what? She is just fine. 

Ellie is still my beautiful miracle baby...nothing will ever change that. She is still the perfect red headed little girl we brought home from the hospital...stubborn and full of life. She is funny, loving, strong-willed, and loves Minnie Mouse and Cookie Monster. She hugs me and she sometimes looks me in the eye...and I know she was meant to be my daughter. She also flaps (especially in the shower), she has repetitive behaviors, she doesn't play with toys like she should, she plugs her ears when she's had enough...

I've been very shy in my response to these comments because I don't even know how to respond. How do you respond to shit like this when you're already in the darkest place you've been, your daughter is banging her head on the hardest object she can get to as we speak, and THREE different qualified individuals ALL came up with the same answers independently of each other!? 

Does anyone out there actually think this is something we WANT? Like we were hoping and praying for this...for our daughter to have a neurological disorder. Like we won a fetching prize with an "at risk for autism" diagnosis (or now with the ASD diagnosis). 

Edit:

I never posted what I wrote back in March. Maybe I thought I'd come back and add to it...or maybe I just needed to get my thoughts out. Either way, I wrote the words above months ago. I feel so much more confident now. I feel so much more educated about Autism. I feel so much more at peace with all of it. At the same time, I feel so inept, stupid, clueless...I have no idea how to help my own daughter. I'm just wingin' it...and hoping to learn what I need to know along the way. I can't tell you how many hours I've spent reading, crying, praying...and loving my baby girl. She is my entire world squished in there with her big brother and her daddy. I longed for my sweet family and no stupid diagnosis can change that. Or us.

Mickey's Trick or Treat Party, But Not Really

Richelle and I decided to skip Mickey's Trick or Treat Party this year. We were irritated at the ticket cost going up (and a couple other things they changed)...thought it might be fun to change it up a bit and go at Christmas time instead. Then Robyn called with her plan: She had a meeting in California in October, so she rented us hotel rooms, bought Sydney and Everett plane tickets to Phoenix...and thought we could all drive over for a Disney weekend before her meeting. I honestly wanted to go (of course), but didn't want to be anywhere near DL on a weekend. In the end, we had a blast! It wasn't the normal Trick or Treat Party, but it was a super fun, exhausting, sugar-filled weekend. I could have slept on a bench on the park...I'm so thankful we had hotel rooms so close.

We drove over on Friday. Richelle thought we should leave super early, so the kids could all swim and run around before our late dinner reservation at Goofy's Kitchen. We arrived in Anaheim around 2pm...the kids all swam and played for a long time before we had to head upstairs to get ready for dinner. 

Dinner at Goofy's Kitchen was yummy! The kids all loved the characters (except Everett...he didn't care for them)...especially Ellie. We walked through Downtown Disney and bought our park tickets before heading to bed. Purchasing tickets took FOREVER! We were so glad we took care of it the night before. 

The next morning we were up early and headed for Disneyland for the day AND night. The parks were estimated to reach capacity (the reason I don't do DL on weekends), so we knew we couldn't leave for naps. We loaded everything we needed into the stroller and headed for fun.

My kiddos both loved all the rides. Blip was big enough to go on all the rides in DL, so he was lucky enough to run off with Richelle and her boys when Ellie had other needs. It's such a blessing for Blip to be on of the boys...his cousins treat him like he's their brother...in the all the good ways. 

I got to ride Splash Mountain with Blip! He rode Space Mountain, Autopia, Buzz Lightyear, and a few others with the boys and Aunt Chelle. Ellie did so well with all the noise and all the people. I was really please with how she handled herself. She wasn't a great napper, but she likes her bed (and I forgot to bring a binki with us to the park). Both kiddos loved the carousel, the rockets, Pirates...I know we went on more, my brain is just tired.

We got back to the hotel LATE, so we all dropped as soon as we got there. Quick showers and pj's...then up a few hours later for another crazy day. Day #2 was spent at California Adventure (until we went over to watch fireworks at DL). We did Cars, Toy Story, the carousel, the Golden Zephyr, the swings (both kids were big enough!), Soarin', the water ride, a bunch of stuff in Bugs Life, and Guardians of the Glalaxy. We LOVED the changes they made when they switched it from Tower of Terror to Guardians...it improved the ride a lot!

Ellie LOVED meeting the characters. She wasn't afraid at all.  She was purely thrilled. It was fun to see. She also loved the rides, so she is a thrill seeker just like her brother. It makes me excited for the big roller coasters we can go on someday! (Hope I'm not too old to enjoy that when the time comes!)

We all slept in (until 10am!) on Monday. We then tossed our crap into our suitcases and hauled them downstairs. I loaded the car while breathing in smoke from a nearby wildfire that started a few minutes prior. I felt sick the rest of the day and had voice issues. It took us FOREVER to get home...we left around 11am and didn't get home until about 10pm. We drove around the newly burning fire, stopped for lunch at two places, stopped to use the bathroom/change diapers, stopped at the outlets for under 1 hour, stopped for dinner, and on and on...I was beyond exhausted when we got home.

I'm so glad we made the trip. It was super fun and our kiddos all loved it. I'm not sure Everett likes DL or crowds, but I'm glad he came along for the ride with the rest of us. I was pleased with how well my kiddos behaved and did on (a lot) less sleep than they are used to. Ellie had a rough few days adjusting after we were home, but nothing too ridiculous. I love my sisters! I'm so thankful for them and for the time I get to spend with them. I've always been so spoiled too have them all live nearby, but with Robyn moving across the country it's a lot more important to take every opportunity to be with each other since those opportunities are so much fewer and further between.

We are planning to go back for one day at Christmas time, so I'm keeping my fingers crossed that we can make that happen for some Christmas magic Disney style!

p.s. We opt'd for the Max Pass for our California Adventure day on Sunday. You can buy the pass per day if you do it through the app once inside the park. If you purchase the Max pass at the ticket window, you purchase it for every day you've bought tickets. It's $10 per person per day, so the expense adds up quickly. However, it was REALLY nice not to run around getting fast passes. AND it told us to the minute when we could get our next fast pass, so we got more passes than we typically would have. We thought it was more important for our DCA day because of Cars, Guardians of the Glaxay, and Soarin'. We didn't attempt Scream because my kids are too little anyway...and you can go single rider on that ride no problem. Overall, I think it's "worth the money," but I still think it's a crock. How much money can they get you for before you can't ever go again? With ticket prices at $110 per day, a large drink costing $3.99, churros up to $4.75...I think it's getting closer and closer to that day for my family (like when the baby turns three in a few months and needs a ticket). And we make decent money, both work full time, and I LOVE Disney. Pretty soon I won't be able to justify spending that amount of money for a couple of too busy days...

Jump Start

The last few months have come and gone in the blink of an eye. I wish I had journaled more, but sleep is elusive and some days are glorious just because we made it.

Mike, Ellie, and I signed up for a class called "JumpStart" through SARRC (Southwest Autism Research and Resource Center). The schedule was impossible, but we made it work. I'm so glad we did! We learned SO much! It was the first time I felt like myself since February. It was a six week class, two classes a week (on Tuesdays and Thursdays). On Tuesdays, Ellie received intensive intervention through ABA Therapy while we learned a lot in a classroom setting. We were also able to watch Ellie work 1-on-1 with a RBT (registered behavior therapist). Thursdays was all parent training. So we worked with the RBT and Ellie implementing ABA ourselves. We loved it.

We learned so much! We didn't want the class to end, but needed the schedule to end. We struggled to keep up with regular life, but we are so glad we attended. We absolutely loved SARRC! 

In addition to JumpStart, Ellie has been having Speech Therapy, Occupational Therapy (OT), and ABA Therapy for the last several months. She qualified for AzEIP in December 2016, but we added ABA Therapy in June. We are blessed that Mike works second shift...that means Ellie can have therapy in the mornings (when most other families can't make morning therapy work). Ellie needs additional hours of therapy, but we aren't sure how to squeeze them in just yet. She qualified for DDD and ALTCS (long term care), but there is a weird issue because she's under three. I am trying to be patient and let some of the issues work themselves out as her birthday approaches...some things just don't seem worth the fight when "winning" the fight doesn't really feel like a win.

Ellie's Autistic behaviors have definitely started showing more and more. However, I'll take toe walking and flapping over her self-injuring any day. And the days of her smacking her head against the wall seem to have passed (mostly). It isn't a daily occurrence any longer, so I feel pleased with that. I believe her increase in communication has helped with the head-banging. Ellie's words have increased A LOT in the last several months. She isn't speaking where she "should" be, but I'm just thrilled with how far she's come in such a short time.