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.

ASD..??

Ellie was diagnosed in November with an expressive and receptive language delay. She also had her hearing tested (also in November) at PCH to rule that out as the reason for a) the speech delay and b) she seemed oblivious to sound about 75% (or more) of the time. Her hearing is perfect. 

In December our Pediatrician recommended we see a Developmental Pediatrician because of the receptive language delay. I honestly put off making an appointment because I really thought the language issue would resolve itself and Ellie was already getting speech therapy, so everything would be fine. 

In January Ellie start self-injuring herself (hitting herself in the face/head with her hands or finding a hard object to strike with her face, or any part of the head/skull). 

I could no longer avoid the appointment after she started self injuring. That was a huge red flag. And we couldn't allow her to just continue to hurt herself...she has hit her face so hard on the tile floor she made her mouth bleed. It's awful to see.

We were VERY lucky...our appointment originally scheduled for SEPTEMBER 27th was moved up to February 22nd due to a cancellation! I'm not sure what I expected the outcome of that appointment to be, but our life has been a chaotic tornado ever since. Most of the chaos is self-inflicted because of the devastation, confusion, and the immediate removal all my sanity (or at least it has felt this way...often).

The Developmental Pediatrician who evaluated Ellie saw lots of things we had chalked up to being just Ellie...her not responding to us/her name, poor coordination, balance issues, not playing appropriately with toys for her age, banging her head against objects when she's frustrated, hitting herself, sleeping with her head jammed into the bed rails of her crib, low muscle tone, unable/unwilling to follow one/two step directions, repetitive behaviors (pushing buttons, light switches, buckling buckles, etc), her speech delay, some speech regression. 

When you list it all out that way it's a lot easier to see a problem. We honestly just see the most beautiful red-headed little girl we've ever seen...she is so full of life. She LOVES to hug and kiss us, she lights up when her people walk in the room, she just doesn't always hear them, respond to them, walk to them without falling, etc. Her speech is progressing, slowly, but surely. 

The Developmental Pediatrician diagnosed Ellie as "at risk for Autism" so we could participate in a research study/have Ellie tested (for free) further before being diagnosed with Autism Spectrum Disorder (ASD). 

I can't speak for Mike, but my brain is literally so overwhelmed and confused and somewhat in denial that I have felt like puking for almost a month. I have read so many things, and have tried so hard to learn how to get Ellie the help she needs, and the steps we need to take once we have an official diagnosis, which will happen on Tuesday.

Ellie is so social and such a love, I had no real idea someone who hugs and kisses and makes eye contact and is so, so happy (almost) all the time could have autism. When you read the list of "issues" it isn't hard to agree with a diagnosis of ASD, but when you KNOW Ellie, it's pretty unbelievable that we are where we are. 

I've read that a lot of girls are not diagnosed correctly with ASD because it presents differently with girls than with boys, so they (the girls) don't receive the intervention they need. We feel very blessed to have a diagnosis this early and know it will improve her quality of life exponentially if we advocate for her the way she deserves. 

P.s. Any advice from anyone who has been where we are would be appreciated. We are traveling this very uncharted road for the first time. 

P.s.s. We need love and support. We do not need to hear that Ellie is fine, that she does not have Autism, that her behaviors are normal, or anything along those very unsupportive lines. If you need to say anything along those lines, please just don't. I'd rather you hit me in the face and take my Cherry Coke away. 

San Fran for Five

Ask my sisters how much I like birthday parties and they will tell you I hate them. But they will giggle to each other that I will eventually give in, spend the money, and have the stupid birthday parties. Ugh. That is somewhat true...I agree, they need a first birthday party (more for the parents, in my opinion). I also think doing a party every other year isn't a sin...until Blip was going to turn five. And I started pricing parties. And weighing my inner strength to see if I had enough in me to plan and carry out a birthday party at home. I almost immediately decided the at home thing wasn't worth it, but the cost to have it at Jump Street or Pump it Up made my stomach turn.

Southwest Airlines happened to have a sale going on, so I decided to see what it would cost us to take a day trip somewhere in lieu of a (stupid) party. It just so happened that Blip LOVES the Golden Gate Bridge (from a couple movies we have)...and the three of us flying to San Fran for the day cost us less than a party at Pump It Up. So I bought the tickets, rented us a car, found a sitter for Sister, and that was that. 

We didn't tell Blip where we were going or what we were doing until we got to the airport. He made a comment that he thought we should fly somewhere some day. We said, "Okay...how about today?!" He was, of course, thrilled with the idea.

Traffic was awful, so we were rushing a bit. I wasn't worried because we can go through the First Class security lines because I have the American Airlines credit card. When we approached the TSA guy he said, "You know this is American, right?" I didn't understand what he meant, but thought he was talking about us being in the First Class line with Southwest tickets, so I said something back to him about having the credit card and it being a perk...he didn't say anything else and sent us through. 

When we finally finished with security we had 12-15 minutes to get to our flight. I was starting to panic...and was frantically looking for our gate number. I couldn't find it. I pulled out our tickets and still couldn't figure out where the friggin' gate information was...then I noticed every EVERY flight listed was for American...and every plane at a gate was an American plane.

Crap. That's what the doofus meant. WHY didn't he make himself clear? He just shrugged and sent us through...ugh. We flagged down someone to help us. That person flagged down someone driving one of those shuttle cart thingys...our gate was not only on the other side, but it was at the opposite end of the terminal. The guy drove his cart as fast as he could (like 10 mph) and got us to our gate with about one minute to spare. When we boarded there wasn't more than middle seats available. I finally belted out that I needed someone to please switch with me, so I could sit with my kid.

Silence.

Finally, a really nice man offered his seat and took a middle seat in another row. I was sweating, and nearly in tears that I ruined my son's birthday...he must have seen the desperation on my face. Or he though I would likely have to be escorted off the plane after I went all mama bear on someone... I would rather die than belt out something loud enough for an entire plane full of people to turn and look at me...on purpose. Mike said he was proud of me...and even let me sit next to Blip.

Blip put his hands in the air (like he just did not care) for take off...and landing. He was stoked because I let him order a Sprite (and he's not allowed to drink soda). He now thinks soda is only allowed on planes...which is totally fine with me.

We colored and played some other games during the flight, but he mostly wanted to look out the window and ask questions. He LOVED flying.  He was so good...I just knew we were going to have the best day ever. I was SO happy that we took a fun trip instead of wasting all that money on a stupid party.

We still didn't tell him WHERE we were going...and unfortunately the fog was SO thick he couldn't tell when we landed either. Oh well.

We hopped in our rental car and headed for the bridge. The fog was SO thick that when we were ON the bridge Blip had NO clue! Ugh!!! We headed downtown for lunch...hoping the fog would lift. We asked the birthday boy what he wanted for lunch...his reply, "Salmon." Perfect city for that request. So we found him some yummy salmon at a fun place on the Pier.

So we ate lunch, rode the escalator a dozen times up and down (because that's what five year olds really want to do for their birthday, duh!), walked/hiked Lombard Street up and down, searched for a Trolley (with no luck...they were all off line that day/week), got a treat at Ghirardelli's, walked across the Golden Gate after the fog lifted, got our National Park Book stamped, bought some souvenirs, and then headed for the airport. I really wish we had stayed one night, but it was the absolute perfect day...with nothing in the way of celebrating our favorite boy.

He's already been asking where we can fly to next year.  I love him.