California Dreaming Part 2

After spending the last 5 days driving from Indiana to California I was extremely exhausted. We had just driven across 8 states in less than a week with my daughter in tow; I honestly never expected to do something like this without having a nervous breakdown along the way. Surprisingly we didn’t have too many meltdowns from Gabby on our trip. I attribute this to the fact that Nanny was in the back seat with her…and she also slept through a lot of the driving. So we have now arrived in Anaheim; first night here and we get to go to the rooftop of our hotel to watch the fireworks display at Disneyland! What a wonderful treat!!

Disneyland fireworks seen from our hotel rooftop

Day 6: We visited the Queen Mary in Long Beach. I can’t begin to explain how dysfunctional this trip ended up being. We took the self-guided tour, but my mother in-law, Mary, only wanted to see the Princess Diana exhibit. She abandoned the tour in favor of this exhibit, and from there everyone just pretty much did their own thing. Ryan and I walked around the decks with the kids who weren’t really interested in learning the history of the RMS Queen Mary through the self-guided tour. My father in-law, Ray, stayed close by waiting for Mary to finish her exhibit.  My sister in-law, Natalie, trailed along with her mother to see the Princess Di exhibit. My sister in-law, Allie, and her boyfriend, Billy, are the only people who continued the self-guided tour. I didn’t really get to learn much or explore much of the ship, but it was a great experience just to be able to walk onto a ship that has so much history that I normally would not get to see.

Day 7: Our first trip to the beach was at Santa Monica Beach. This was a really fun day for us. It was the first time Dylan and Gabby had ever seen the Pacific Ocean and the first family trip taken to any ocean. We buried Gabby in the sand and gave her a mermaid tail, we dug in the wet sand looking for sand crabs, we saw a guy feeding seagulls, and we got to use our boogie boards in the water. We were so burned out after playing on the beach and in the water that we didn’t get to go to the pier for the rides. We had a BLAST!!

Day 8: Our trip to the happiest place on earth, Disneyland!! This trip was most definitely a successful adventure. We had to get a family fast pass for Gabby since we knew she couldn’t handle waiting in a long line. We didn’t get to ride everything, but I’m completely okay with that. We went on the Finding Nemo ride, Space Mountain, Disneyland Railroad, Matterhorn, Snow White, Haunted Mansion, Splash Mountain, and Pirates of the Caribbean (several times). Unfortunately, Gabby wasn’t tall enough for the Indiana Jones ride. I guess we will have to make a return trip to Disneyland one day. We got to meet Thor from the Avengers; Gabby asked him lots of questions. Dylan was picked for Jedi Training where he had a lightsaber duel with his hero Darth Vader. I was almost certain he’d try to join the Dark Side! We tried on many hats at the Mad Hatter’s hat shop. We allowed for each child to pick out something special to take home from the gift shops. Dylan built his own lightsaber, red of course, like Lord Vader. Gabby bought herself an Anna/Elsa doll. We stayed at the park until closing time and left wishing we had one more day to explore.

Day 9: Anaheim Angels game and a trip to Huntington Beach to see the old house. My in-laws took Dylan and Gabby to their first Angels baseball game while Ryan and I checked out my hometown together. We saw the house where I grew up when I lived in Huntington Beach, and drove by all the places I remembered as a kid. It was a nice trip filled with many memories and a ton of nostalgia. Not a lot has changed since I left…which is really surprising since I haven’t lived there in more than a decade. We also had to make a stop at Carls Jr. for some fried zucchini. Sounds strange I know, but there is no Carls Jr. in Indiana and I had to complete the nostalgia journey, LOL! It was worth it!! This day was also my mother in-laws birthday, so we also had dinner at Bubba’s Shrimp Co. Then we headed back to Huntington Beach to spend sunset as a family at the pier.

Day 10: Hollywood Walk of Fame and The El Capitan Theatre. We went to Hollywood with only one purpose. To find Peter Jackson’s star on the Hollywood Walk of Fame. We are really big nerds and I am a huge fan of Tolkien’s Lord of the Rings and The Hobbit. My dream would be to one day make it to New Zealand for a family vacation just so we can go to Hobbiton. We found PJ’s star pretty quickly, so we decided to see a movie that Gabby really wanted to see at a 89 year old theatre called the El Capitan. It was well worth the money we paid for the tickets. Inside Out was a great movie, we had such a great time! It was a little overwhelming with all the people dressed as fun characters like Capt Jack Sparrow, Spiderman, Batman, and minions and then asking for money for photos or high fives. We ended up telling the kids not to talk to anyone because we didn’t feel comfortable with all of these random people just walking up to us wanting some money in return and the kids really didn’t understand that the people in costume expected money for photo ops and high fives!

Day 11: Whale watching experience at Newport Beach. Well we didn’t get to see any whales, but we did get to see dolphins and some seals on a buoy. It was pretty cool. We ate breakfast on the boat that tasted fantastic. The kids really liked being surrounded by dolphins who were following the boat. It was a little difficult at times to keep Gabby calm since we were on an enclosed space and it was not easy to take her to a quiet place when she became upset. She really just didn’t understand why we didn’t want her walking all over the boat; it wasn’t something she saw as dangerous.

That was our last day in Cali. After the Whale Watching we started our drive to our next vacation destination to visit with family in Arizona.

Regression

Regression is one of those things that I’m sure every parent of a child who has autism hates to go through. The other day our daughter’s therapist told us she thinks Gabby may be going through some regression. We’d been seeing signs of her slipping back into some of her old behaviors for a few weeks now. It still stinks when they tell you that she can’t help it and we don’t know how long it will take to get back to the progress we had been making. As a parent, it makes you find yourself asking “what could we have done to have prevented this slip backwards?”. I wanted to cry when the therapist gave her answer, “Nothing”. According to her, children with spec    trum disorders often regress into many past behaviors. It’s just like a phase or a cycle that Gabby is going through right now. To make it worse, the therapist also said that regression can last days, weeks, or even years.

I felt so heartbroken. To think that we’d made all of this progress with Gabby, and now we are moving backwards and starting over. . . this isn’t Candyland, where you have to go back to the start or Monopoly where you go back to Go and don’t collect $200! This is real life; how could this be happening! It is the worst feeling when you realize you just spent the last three years correcting all of these issues and getting your child on track only to be right back where you started. It just doesn’t seem fair!

In the last couple of weeks, Gabby has been experiencing an increased sensory overload. This is where, the sounds and sensations she is feeling overwhelm her and she can’t handle it so she has a meltdown. It happened at her birthday party at Chuck-E-Cheese. We were in line to get her prizes and there was a crowd of people building up behind us. When it got to be her turn to pick her toys, she froze and didn’t respond. So I said, “Gabby, tell the lady what you want, there are other people waiting”. She spent a few more seconds and started showing some signs of distress (whining, covering up her ears) and then she just exploded. She yelled out “It’s too loud and all of these people won’t shut up and I can’t think!”. We had to move her to the other side of the prize area so she could pick out her toys without a ton of people encroaching on her and talking about what they wanted. She even melted down about being moved to the other prize area, until she realized that the prizes on that side were the same as the others. I know Chuck-E-Cheese is a noisy place, but it still surprised us that she reacted like that because it had been over a year since she had experienced any sensory overload like this. I kind of put this incident behind me and thought maybe it was just a fluke or that it was in fact way too noisy for her in there. Then last night during therapy, her brother decided to run around the house pushing his toy truck and it happened again. She started screaming telling Dylan to stop, telling us he was being too loud for her to color in her workbook. Even when Dylan tried to slow down and play with the truck quietly, she still just couldn’t stand it.

We have also been seeing an increase in Gabby’s tantrums. Anytime something dissatisfies her she has reacted by having massive meltdowns. I had a doctors appointment this week and had to have my in-laws come over to see the kids off the bus. Unfortunately, Dylan’s bus comes earlier than Gabby’s and she knows that too. That morning when my mother-in-law called to confirm that she would be there in the afternoon, Gabby became instantly upset. When I asked her what was wrong she pointed out the fact that Dylan would get to spend more time with Grandma Mary. She was crying and very emotional about it. I did my best to calm her but I was interrupted by the bus arriving to pick her up for school. That afternoon I got home just as Gabby’s bus was arriving to drop her off with Grandma, Grandpa and Dylan waiting for her. Just as I had anticipated, the second she stepped off the bus and saw them with Dylan and me already home from my appointment she became distraught. It was so bad that she didn’t stop crying until they left. No matter how much Grandma Mary promised that she’d get to spend more time with her on the weekend or that they didn’t really spend that much more time with Dylan, nothing helped to calm her. She was so angry and upset, her face turned a shade of deep red, she was stamping her feet, and would tense up becoming very rigid and stiff every time Grandma would respond to her. She would go back and forth from being “lucid” for a few seconds and then right back into meltdown mode. It got so bad that I had to scold her for the way she was speaking to her grandmother. And like many of her tantrums she shut off her waterworks, her screaming, and her meltdown like a light switch the second her grandma walked out the door. To her it was like nothing had ever happened. These tantrums can occur over the most minor happenings. Some examples of some of the things that can set her off include: her brother getting to pick his own show to watch, her brother needing alone time, getting the wrong color plate at dinner time, her not being able to get her writing or a drawing just the way she wants it to look, if Dylan’s craft looks better than hers, and my personal favorite is when the marshmallow to dry cereal ratio in her Lucky Charms is inadequate therefore rendering them inedible. Even a broken crayon can seem like the end of the world to my daughter. No matter how much you tell her that we can peel off the paper and it’s still the same crayon, to her it is simply unusable and must be destroyed.

Another really awful regression we have been seeing is her selective hearing. Sometimes when we are trying to get her attention she just doesn’t seem to hear us. I can be saying her name over and over again but she looks on and doesn’t acknowledge one word I’ve said. If we didn’t know any better, we’d think there was something wrong with her hearing. This happened the other day when I caught Gabby mindlessly eating one of her crayons. I yelled out her name to get her attention, “Gabby”. No response, not even a blink of her eyes. I said her name a bit louder “Gabby!”. Still, nothing, still shaving off little bits of colored wax into her mouth. I finally walked over to her and had to physically remove the crayon from her hand, “We don’t eat crayons, Gabby, they are for coloring on paper only”. A couple minutes later I had to take the crayons away after catching her chewing on another wonderful wax-flavored color of the rainbow (sigh).

I know it’s only three slips of regression but add to it that we are still dealing with her day-to-day behavioral issues, and you can understand how overwhelming this situation feels. The current issues include: needing her meals to be a certain way, needing clothes to be just so, wanting to be on schedule for every little thing with absolutely no room for deviation, her need to talk incessantly to express herself and her often very abrasive opinions, and her needing to run, stand, and be in motion basically during all waking hours (this includes meal times – she simply cannot sit still). As parents, Ryan and I will have to revisit our past ways of defusing tantrums, correcting her selective hearing, and making sure we prevent her sensory overload as often as we can. All that on top of the work we already have been doing to keep her well behaved, well adjusted, stress free, and most importantly happy; it’s a lot to take on.

I suppose when you are a parent raising a child with autism you kind of have to be prepared to change gears at a moments notice. I know I feel super overwhelmed at times with all the sudden changes and new information we are learning everyday about autism. I admit that I think that the regression is a horrible thing that I wish we didn’t have to experience, but I honestly think that living through all it is making us better parents than we ever thought we would be. My daughter may exhaust me and stress me out like no other child, but I also couldn’t be more proud of the little person she is becoming. And I like to think Ryan and I have a huge part to play in how far she has grown in her six years on this planet. Gabby is an intelligent, creative, loving, well spoken albeit opinionated, and sometimes wise beyond her years six year old. What parent wouldn’t be proud of that!

There and Back Again: A Family Tale

It’s been a while, but families are always about being busy. 

I thought I would give everyone an example of a typical day in our lives. Here we go. . .

5:30 A.M. : My wonderful, loving husband gets up with his alarm and promptly hops in the shower for a quick 15 to 20 minutes. Then he gets dressed, raises both kids from their beds, hands out their early morning meal, and typically has them dressed all before I’m even batting an eyelid. Ryan often deals with a feisty, Gabrielle, trying to gently push her to eat her pop-tart/cereal, get dressed, or even go potty. We struggle with her most in the mornings, it takes the smallest deviation to set her off into a full-on “terrible two year old meltdown”. For instance: we run out of her preferred cereal or flavor of pop-tart, or she all of a sudden no longer likes that cereal or flavor of pop-tart. Sometimes the meltdowns are fashion and accessory related: I don’t want to wear pants, I wanted to wear a dress, I don’t like tights, I already have socks, or mommy already picked out something for me. Even a task as simple as “now, go find your shoes/jacket/backpack” can lead to an emotional breakdown if she’s not in the mood to look for them. Believe me, this struggle is real for parents of a child on the spectrum. I think he deserves some sort of an award for that right there.

6:20 A.M. : Ryan wakes me. Sadly, is the absolute latest I can ever sleep in on a weekday. I throw on some pants and a t-shirt, grab a granola bar, and we head out the door.

6:40 A.M. : We pile into the car. Usually, there is a personal struggle between Gabrielle and her seat belt. The seat belt often wins and we have to listen to a meltdown about how she simply can’t do it. At which point, Ryan, exits the vehicle and assists Gabby with her seat belt. If we are lucky, we make the long drive to Ryan’s job without any further meltdowns. Making it without meltdowns is very rare and we usually see a meltdown or two over things like: car territory disputes (my kids fighting over the vast space in the back seat of the car), siblings talking (Gabby gets angry with Dylan if she doesn’t agree with things he says), siblings looking at each other the wrong way (there are mornings where Dylan just looks at Gabby in a way she finds offensive).

7:15 A.M. : We drop Ryan off at his school. Ryan says his goodbyes as he prepares to plunge into a day of dealing with unruly, unpredictable teenagers. Things can be devastating for us if he forgets to say goodbye to Gabby. She has also been known to request hugs and kisses through the car window, and if this doesn’t happen then we often have a critical meltdown.

7:25 A.M. : Back to the freeway. This is probably the worst time for me personally because I’m alone in the car dealing with rush hour traffic conditions and two occasionally arguing children. It sucks to be without Ryan as my backup because I simply can’t whip around and correct the disputes between my kids. Gabby has been known to get physical over her disagreements with her brother. Sometimes I feel so bad for Dylan when he’s trapped in a car sitting next to an exploding Gabby. All I can do is threaten time-outs or toys/activities being taken away; threats that aren’t instant usually don’t mean anything to a 6 year old.

7:50 A.M. : Drop Dylan and Gabby off at school.

8:00 A.M. : Now the kids will go to class and eat their “Second Breakfast” (our school system offers a free breakfast to students, so 2 hours after eating breakfast at home they get to eat another one), and I will head home. Ah, finally my morning running is complete! I can now be at peace. I drive home, sit down to relax and oh wait. . . there is still so much stuff to do. I have dishes, laundry, bathrooms to clean, floors to vacuum, kitchen surfaces to clean, trash to take out, and random knickknacks to put away! “Well, this crap isn’t going to clean itself”, I guess I’ll pick an activity and get to it. When I’m alone is honestly the only time I can clean, free of distraction and chaos. I hate trying to clean a house when everyone is running around doing their own thing. I’m like, “Yeah, destroy the area I’ve just spent the last half hour picking up, thanks for that”. At least if I clean while everyone is away, I’ll get sometime to enjoy the house looking nice.

12:30 P.M. : Lunchtime. I use this time to a.) eat and b.) catch up on one of my favorite shows. This is generally my “ME TIME”, a time of peace, stuffing my face, and Downton Abbey or whatever.

2:00 P.M. : What! How is it 2:00 already!! What happened to my “ME TIME”, it can’t be gone that fast. Time to get up and fix the kids their after school snack. No idea why, but the school system feeds my kid at like 10:30 in the morning. Therefore, when they come home it’s like they could eat a whole meal. I try and stick with healthy snacks so he doesn’t ruin dinner. Lucky for me, the kids love eating fruits, vegetables, cinnamon/jelly toast, yogurt, and cheese sticks.

2:40 P.M. : Pick the kids up from school. Sometimes we get a meltdown or two if I ask the kids about their day. If Gabby has not had a good day at school she will become very angry or aggressive and may take it out on her brother if he had a good day. So I have learned to only ask about the school day if both kids appear to be in high spirits when they get in the car.

3:15 P.M. : After snacks are eaten, one kid gets to watch a show while the other kid does their homework. I don’t know why, but it seems to work out best this way. It’s just less fuss if I can give 100% of my help/attention to only 1 kid. Dylan’s homework can be stressful, especially when there is reading involved. He sometimes gets so frustrated with his poor reading ability that he will break down in tears. We try to encourage him to sound out the words and keep going but the pressure can get to be too much for him. This is typically the only time we see whinny/upset Dylan. Most of the time he is a pretty laid back and relaxed kid. After homework and a show, the kids either play outside if it’s nice and sunny, or they play in their rooms, or the quiet room to look at books or color/draw pictures. I usually try to check on the kids outside or in their room every 20 minutes or so. Gabby has “PICA”, a psychological condition where she will literally eat anything. I mean anything from rubber balls, erasers, crayons, styrofoam, blankets, rocks, sand, grass, flowers, soap, etc. In fact, you name it, Gabrielle has probably tried to eat it at some point. We think it’s part of her autism, but we aren’t sure and the doctors haven’t confirmed that PICA is part of the spectrum disorders.

5:00 P.M. : Prep and cook dinner. Sometimes I will also be giving the kids a bath at this time, especially on days when Gabby plays outside and gets herself muddy. She likes to dig holes his our yard; a habit Ryan and I would like to break her of; especially considering that the previous owners of our home told us they have a dog buried somewhere in the back yard.

5:30/6:00 P.M. : Serve the kids dinner. They have about 30 minutes to eat before we have to leave to pick up Ryan.

6:30 P.M. : On the road again. We hustle to get socks, shoes, and jackets back on in order to jump into the car and leave to pick up Ryan. Sometimes this activity is absolute chaos as Gabby and/or Dylan doesn’t want to leave the house; naturally they’d rather spend more after school and before bedtime, playing.The rush of getting the kids ready to head out immediately after dinner can sometimes lead to the kids skipping a step like actually putting on the socks and shoes. We’ve stopped at a store before after picking Ryan up only to realize that one kid didn’t put shoes on before jumping in the car.

7:00 P.M. : Get Ryan. We now have Ryan and are able to head back to the freeway and go home. This is often the only time of day I get a chance to talk to my husband about how his day went/how my day went. We spend much of this conversation time being interrupted by our kids and sometimes Gabby will interject her own opinion into our conversations. She thinks she knows best, and her opinion is never wrong. Challenge something she believes is fact, and it could lead to a meltdown. For example: we once had a heated debate over what time of day the kids wake up to eat breakfast. I was talking on the phone to my grandmother and Gabby overheard me telling her that Ryan gets the kids up at 6:00 in the morning to eat breakfast. Gabby immediately interjected with “No, Ryan wakes us up at 6:00 at night”. I corrected her a few times before I realized that she considers anytime where the sky is still dark to be night time. We laughed at her observation and set her straight on the truth, but she never gave up on her own point of view. She still wants to believe that Ryan wakes her up at 6:00 at night.

7:30 P.M. : Home at last. We get home and immediately start getting the kids ready for bed. They brush their teeth and go to the bathroom. Ryan reads a bedtime story from whatever book they are working on, at the moment it’s Aesop’s Fables.

8:00 P.M. : Adult time begins. After the kids are tucked away in bed Ryan and I get to re-heat and eat dinner, and spend some quality time together. We usually end up watching a show like Top Gear UK, Star Trek TNG, Heroes, Dr. Who, The Walking Dead, or Hannibal.

10:30 P.M. : Bedtime. We usually get to head to bed together. However, since Ryan teaches sometimes he has some grading or planning to do at the end of the day for an extra hour or so.

11:30 P.M. : Sleep. . .Zzzzzz. . . sleep now, rest while you can. Tomorrow the chaotic journey begins all over again.

A Bit About Me

I am Shannon. I just recently hit the big 3-0 milestone, the dirty 30. I am married to an early college professor, and we have two beautiful children together. I am a history fanatic, the family historian, the family photographer, and the family chauffeur. I’m also a self proclaimed nerd who loves BBC shows, comic book movies, Tolkien, Star Wars, The Walking Dead, Star Trek, and anything Science Fiction related.

I met my husband, Ryan, in 2005 but didn’t get an opportunity to date him until 2012. We were married on my sister’s birthday October 25, 2014. We love to be giant nerds. We enjoy cooking together, discussing life and hypothetical topics, discussing zombie apocalypse scenarios, watching British Television, watching documentaries, and going to the cinema. He is mostly blind because he was born with a genetic condition called retinitis pigmentosa, a degenerative eye disease. Despite this, he teaches English Composition and Philosophy to high school students at a college prep school. Since he has only a 13% window of vision I have to drive us everywhere. Every weekday morning, I get up and drive him with our two children in tow to the school where he works; it’s about an hour drive there and back.

My son, Dylan, is a typical boy: he loves video games, superheroes, Legos, TMNT, Dr. Who, Star Wars, Batman, playing music on his guitar or his piano, and teasing his little sister. He is our family’s clown, always trying to make everyone laugh by acting goofy. He’s already a nerd and that makes Ryan and me so proud! He is also one of the most caring and polite little boys ever; I always get many compliments on how well behaved he is. If I could only get him to do some homework every once and a while, he’d be an absolute perfect child. And I may be biased but he is also super handsome! I mean, I think we’ll be in serious trouble when the teenage years get here. We recently discovered that he may have dyslexia and are in the process of having him tested. We are currently working to have him held back in 1st grade since we are just now learning that he has problems with his reading, comprehension, and difficulty with his writing. As parents, we just want to make sure he gets the support he needs to master all of the skills needed to pass 1st grade.

My daughter, Gabrielle, is. . . well she is a drama queen. She loves to be bossy, is incredibly stubborn, and beats up her older brother. We found out recently that she has high functioning autism/Asperger’s. We have known that she was “different” since she was about 9 months old. She simply wasn’t meeting the milestones we thought she should be meeting. She had very delayed speech: she was 3 years old before she could call me mommy, and she would just whine or cry to address her needs. She was a late walker, was often clumsy on her feet, and had other delayed motor skills. At the advice of a fellow mom, we took her to the school system to be tested. They immediately wrote her an IEP (Individual Education Plan) and enrolled her in Developmental Preschool. It took us two additional years to get the pediatrician to finally diagnose her as being on the autism spectrum. Apparently high functioning autism is pretty hard to diagnose. She is super intelligent, so there is nothing delayed mentally, but she has a really hard time dealing with and understanding other people. We are reading lots of books and learning how to adjust our parenting to accommodate all of her behavior issues. It’s been really tough and stressful, but I’ve discovered that many of her autism behaviors make her really special and unique compared to other kids. I don’t know anyone else who has a kid so obsessed with Frozen that they memorize all the songs in other languages or who can draw such detailed artistic drawings (all of Elsa, of course)! It’s sometimes difficult to understand many of her behaviors and it’s even more difficult to explain to people who don’t see her everyday that she acts the way she does because she is on the spectrum. Every day with Gabby is a new day, filled with new challenges. Sometimes we get things right and have zero meltdowns and sometimes we have days with many explosions of emotions. On the bad days I tell myself, “we just have to take a deep breath, count to ten, and move forward.”

Our lives are super busy keeping up with behavioral therapy, transporting people here and there, and still finding time to spend as a family on the weekends. Sometimes I just want a break from all the chaos that goes on in our day to day lives. However, I am beginning to accept the fact that my life is probably always going to feel like living in a jungle.