Sunday, July 30, 2017

A Nice Weekend and June Gives a Talk

 The first half of July was so crazy, and I have enjoyed the slower pace of the last half.  June has one week left of summer school, and then we will have a complete month off from school, which starts back up after Labor Day here in NJ. I never knew the East Coast was on such a different schedule, but June's last day was June 23rd and her first day back is after Labor Day.

A quick photo shoot before heading out to the bus. And yes, this is the best shot of that morning. Eek.

Yesterday was positively delightful. The weather was a bit cooler, but we decided to head to the pool anyway and were the sole occupants for a good portion of our time. It was awesome!

Dan was with the girls in the pool. He has a goal of getting June to pass the swim test so that she can go down the slide before the end of the summer. So he's been working with her a lot lot lot. Yesterday, he confirmed the test requirements with one of the lifeguards and found out that we had been misinformed about the test. She is a good swimmer, but the test is much harder than we originally thought. She has to jump into the pool, tread water for 30 seconds and then freestyle across the pool in 20 seconds or less.

I don't know if that's going to happen this summer. Ha. Maybe next year!

I had the easy job of sitting with Harris.

See that major flat dent in his head? I see a helmet in this baby's future.

Our pool also has four square and tetherball courts. We headed over that way next. Dan played with the girls, and then he challenged me to a match. Which was ridiculous. Because I'm terrible at stuff like that, and Dan won by 298347327 points every time.

So I started coming up with ways to beat him. I made him put one hand behind his back. He still beat me. Then I introduced a new version of the game called "Phantom Tether" where he had to keep one hand at the level of his eye for the duration of the game. He still smashed me. Then I quit while I still had some dignity, though what dignity you still have after making up a Phantom of the Opera version of a playground game, I know not. Another mystery for another day.

We went home and bathed the girls. Then, in true Jolley form, we went to check out the new Wegmans that opened in our town. Grocery stores continue to be a hot topic in this house! It was a total zoo, but had great customer service. The manager of the store saw that we looked a little lost and helped us navigate our way around and also went to the bakery and picked up some cookies for the girls.

The girls were excited about the train they had going around the deli, all of the people and all of the food. They were acting like maniacs, so we quickly picked out dinner from the 38924732987 options they have in their food court and made our way back out to the car.

We arrived home around 6. Much to our delight, all of our kids fell asleep in the car. No one had had naps that day, so we put everyone in their beds/cribs and congratulated ourselves on an unexpected "date night" and ate our dinner and watched a movie without the kids.

Until they woke up at 7. Drat.

It was still a fun night.

June was asked to give her first-ever primary talk. If you recall our primary program last year, you never know what this girl is going to say if you give her a mic. Her mother is like that too.

 I have found that a mixture of pictures and words works best for June to memorize things. We practiced and practiced. And it was going just okay. June was so distracted, and she would say something off the wall every single time. Which is pretty funny and cute, but to a point. So I was trying to limit these comments to just a couple per practice, and I didn't feel like we were progressing. So I finally told myself to STOP worrying about it. It's just a primary talk after all, and primary is the place we learn!

After Sacrament meeting, Dan turned to June and asked, "Are you ready to go give your talk?" She was SO excited, without even a trace of fear. She ran up to the podium in the chapel and tried to give her talk as everyone exited for 2nd hour classes. We had to explain to her that her talk was in primary, not Sacrament Meeting. So she ran off to the primary room.

When it came time for her turn, she jumped up and ran to the podium and hit it out of the park. I was shocked. You never know what's going to come out of that girl!

Here is her talk:

That's it. Only 6 sentences. But it was definitely the perfect length for her to learn in just a few days.

After her talk, I exclaimed, "June, you did SUCH a good job on your talk!" To which she replied, "Superwhy! Superbot!"

And we were back to normal again.

After church, we raced home to make dinner for friends. I messed up every dish and burned the main course. I also burned my thumb. I was SO frustrated that I excused myself to the other room to give Harris a bottle. When I returned, Dan has cut off the burnt side of each taquito and announced that we were just going to call them "taquito tacos". He really saved the day. And then our guests had to cancel, and we ate the taquito tacos ourselves.

And they were delish.

The end.

Saturday, July 22, 2017

July 'Til I Die

July has been the most fun, exhausting, go-go-go month ever.

We started the month with my sister-in-law Christine's visit. She and my brother Dave were in Boston for a work trip for him, and we had been planning for awhile to have her come down on the way back so that she and I could go into NYC together. But she didn't know when we were planning it a few months ago that she was going to be pregnant and so sick when she finally came. Poor thing was so nauseated, but what a trooper! We still did so many things, and every once in awhile she would sneak off and die a little bit, and then come back and act like everything was fine.

Every time I call Christine, I sing her name like the Phantom does in Phantom of the Opera. I have been doing that for years, and only recently did she tell me that she has never seen Phantom. I now realize how weird it has looked for me to sing her name in a deep voice every phone conversation. So, it was only fitting that we went to see Phantom while she was in town. It was an excellent performance.

Here's my secret about Phantom of the Opera--I love it, but I laugh the entire time I watch it. That Phantom is a hilarious weirdo. And Christine is so needy ("All I ask is every waking moment, turn my head with talk of summertime!" That's it, Christine? Just let me entertain you every second of my life? Yes, Raoul, sign up for a lifetime of that!)

But it was so good, and I loved it.

Christine left, and my mom came into town a few days later, and we went to "Anastasia." It was SO GOOD. I'm glad I made sure to get that girl in the row behind us in the picture. Just adds a little something, doesn't it?

Dan's parents and sister Mikaela came a few days later, and Dan blessed Harris.

I am the luckiest gal because my mother-in-law is an excellent seamstress. Beyond excellent. She made Harris's blessing outfit, and this picture does not do it justice. 

I forgot to take a picture of the details on the cuffs because she had pearl buttons there too. Exquisite.

Harris received a beautiful blessing where he was blessed to know the truthfulness of the Gospel, serve a mission, marry in the temple and to be special witness for others. The blessing was a bit difficult as he was squirming the entire time and trying to jump out of the hands of the men who were holding him. And also crying. Actually screaming. But I heard most of it and loved what I heard.

The next day, my mom left, but the Jolleys were able to stay and party for the week. We did so much with them!

Dan took them all into the city one day, and they were able to go see Phantom while I chilled at home with the kids. They wanted to take the kids, but I thought that sounded absolutely torturous for everyone, so the kids and I were content to go swimming that day and relax at home.

We also went to two outdoor concerts, the movies, to the pool and to a little lakeside beach.

Dan and his dad went golfing a couple of times, we went for walks along nature trails, we went to the park, and we grilled on the barbeque almost every night.

One day, Mike, Kristi and Mikaela watched the kids so that Dan and I could do a session at the temple. We are in the Manhattan temple district, but since we had gone into the city several times recently, we opted to go to the new Philadelphia temple for a session.

And this is what across the street from the temple looks like:

It was so beautiful, and we can't wait to go back and spend more time in Philly.

Our house felt very empty after all of our guests left, but we have kept busy with summer activities. We swim at our local pool almost every day, we go to the library all of the time, and we still grill almost every night.

Last night, we drove to Pennsylvania to go to a well-known drive in called Becky's Drive In. They have tons of stuff for kids to do before the movie starts, and it's a really popular spot for families. Which is so different from the drive-ins I am accustomed to.

One of the things they are known for is having employees dress up as characters from the movie you are going to see so that you can take pictures. They also sometimes have pony rides, train rides, and the night we went they even had a juggling act.

I bought my kids tickets for the little train, and I noticed the sweet elderly woman at the cash register was hand writing each purchase on a notebook for her inventory. No computer or anything. A nice step back in time.

To the surprise of no one, I slept in the back of the car for the duration of the movie, but the girls had a great time. We got home close to 1 AM, but that didn't stop Gwen from getting up at her usual time of 5:30. Youch.

Here's hoping for an early bedtime tonight.

Sunday, June 25, 2017

We have a kid named Gwen.

Poor Gwen. She is the quintessential middle child. And she's being raised by two middle children, so we really get it. Having an older sister with special needs and a newborn baby brother, Gwen often gets overlooked. Dan and I have both felt impressed that we need to make a stronger effort to make sure Gwen gets the attention she needs, and I'm starting with this blog post.

Gwen. Such a little name for such a person. (Name the movie for 10 points!)

Gwen dresses like a princess every single day but acts like one of the lost boys from Peter Pan. She regularly walks on all fours and barks like a dog or runs away from me to play with other kids at church. She races out of the chapel every Sunday to go to nursery before we can even catch up to her. She cries the whole way home when we depart from a play date and begs to see her friends again. She loves going to story time at the library and chasing the boys around the stacks.

In short, Gwen is a people person.

I don't think she has worn a pair of pants one time in the past 3 months. She's a dress/skirt girl. In fact, after I put her back to bed at night, she sneaks out to her dresser or the hamper and pulls out a dress and puts it on to sleep in.

This is how I found her dressed one morning and discovered her nighttime wardrobe shenanigans.

Here's another example. Put her church dress back on after I put her to bed, and she wore it most of the next day as well. Backwards. But putting away silverware, so I'll take it!!

A Gwen outfit original.

Saying Gwen is an active child is like saying cheesecake is a nice dessert. The description doesn't begin to fit the bill. She's active and as a result of her activity is very often injured. We have a steep flight of stairs down to our basement, and they are made of concrete. Gwen recently fell down them backwards, doing backwards somersaults the whole way down. And cried for a few minutes and then was okay. A few days ago, she tripped while walking (Hello Heather Jolley genes!) and instantly developed the most grotesque bruisy bump on her forehead.

But was fine.

She was a pretty difficult kid for most of last year, but is starting to mellow and be a lot more fun. Maybe. Sometimes. There's a light at the end of the tunnel?

We love her.

Friday, June 23, 2017

June Q&A

Warning: This post is looong and informative, not entertaining. I won't be offended if that's not your thing and you skip it.

When we moved to Tampa, we instantly became friends with another family in the ward. The wife and husband are about 15 years older than Dan and I, and they almost became a surrogate mom and dad or uncle and aunt to us. Our kids called them their "Florida Grandparents." One of their daughters has pretty significant special needs. After being friends for awhile, I asked my friend some questions about her daughter which I had been holding back. I worried about being offensive or saying something stupid (which I often do). She was great with my questions and told me that she wished I had felt like I could have posed them sooner.

Now I have a daughter with special needs, though much less significant. And people can be pretty timid with their questions. So I thought I would address some common questions here! I am an open book about it.

Q: What's up with June?

Mismatch Day at school

A: June has a diagnosis of Level 1 Autism. She struggles with appropriate social interaction, learning in a group setting, paying attention and getting lost in her own world.

Q: How severe is she?

A: The autism spectrum has been divided into three "levels". Years ago, you would hear about Asperger's Syndrome and Autism being separate things. Now they (don't ask me who "they" is--the gods of the Autism Spectrum, I guess) have done away with the different diagnoses and call everything ASD (Autism Spectrum Disorder) with varying levels of severity (1 is the least severe and 3 is the most). Someone with a diagnosis of level 3 is likely nonverbal or may have extremely limited speech. June is the in "least severe" level 1. She has a lot of language and requires less support.

Q: So would she have been diagnosed with Asperger's a few years ago?

Flag Day (and Gwen does whatever she wants)

A: Probably not. Asperger's had its own characteristics, and for that reason many people are upset that everything is being lumped together. June was considered for Pragmatic Social Communication Disorder, which deals solely with social interaction, but the doctor thought she was a bit too rigid in other areas of her life to qualify for that diagnosis.

Q: But she's so social! I thought kids with ASD weren't social!

A: They often aren't, but sometimes are. June is social and loves people but does not know how to appropriately interact with them. Her social skills can be extremely awkward. She struggles having a reciprocal conversation because her brain gets stuck and only wants to discuss a few topics. Often, she'll prompt people to say what she wants them to say instead of letting the conversation flow. Sometimes I want to do this with other people too, but I refrain. Ha.

Also, the ASD diagnosis and evaluations were put together based on a bunch of boys. Because boys have ASD waaaaaaaaaaaay more often than girls do (about five times as much), girls have been harder to diagnosis. Girls tend to be more social than boys, and that includes girls on the spectrum. So even though she is more social than a lot of kids with autism, she still struggles with appropriate social skills.

Q: Is she in a regular classroom at school?

The world's worst bang trim. Thank you, Great Clips!

A: First of all, be careful about calling things "regular" or "normal". I don't care if you say it (and I say it often myself), but the PC term is "neurotypical" or "typical". And June would be considered "neuroatypical". But no, she has attended a self-contained classroom since she was 3 years old. I just had a meeting with her case study team at school, and it was determined that she will remain in a self-contained classroom for kindergarten. If she shows enough progress next year, they are hoping to move her into a mainstream typical classroom for 1st grade.

Q: Do you want her in a mainstream or self-contained class?

A: There are so many pros and cons either way. 

She is very safe in her self-contained class. Safe from being overstimulated and safe from kids making fun of her, She also has a ton of support in her current setting. Her classroom has a 1:1 adult to student ratio. There is a full-time teacher and several aides and a behavioral specialist. They are highly trained on how to teach kids with special needs and how to deal with tantrums and meltdowns and rigid behavior. Also, June really struggles with learning in a big group. She will not pay attention unless you are in her face.

On the other hand, the mainstream classroom offers tons of typical peer models that she can learn from. There have been many studies that show that some kids progress most when they are learning alongside with kids who are not struggling with the same things they are.

I met with a therapist earlier this year to discuss June's school placement, and he put it in a way that really spoke to me. He said that a common misconception is that kids are placed in a mainstream class if they are on the smarter end and in special ed if they are not. But it has nothing to do with it. It has everything to do with how the kid learns best. June's teachers and I really struggled to know where to put her. She loves kids and needs to be around them to learn to socialize better. But she requires assistance on almost every task. Some of the assistance required is physical--helping her put on her jacket, button her clothes, etc. But most of the assistance is getting her to do what you say. She gets very stuck on what she wants to do or say and needs a lot of help to get with the program.

Gwen's general attitude about taking pictures.

Q: Aren't kids with ASD geniuses and have special talents they can do?

A: Sometimes. Some kids can do tons of crazy amazing things. Not all. June doesn't have a special crazy talent, though she is good at lots of things. She loves art and music. She's an excellent swimmer. But she also can't run or jump or go up the stairs without holding on to the handrail. She loves to sing, but when asked to perform on command, she rarely does. It's frustrating!

Last Day of School! Which was today (06/23! Isn't that so late???)

Q: What are some examples of rigid behavior that she exhibits?

A: Some kids have a thing they are set on forever, but June's little quirks come and go. She insisted on being called "Fluffy the Dog" for six months straight last year. And "Dumbo" for awhile. You can only imagine the looks I got when I would say, "Hurry up, Dumbo!" to my sweet little three year old scurrying behind me. Not my best look.

Currently, she has an extremely rigid bathroom routine. She places her green blanket outside the bathroom on the floor in a perfect square before she enters. When she opens and shuts the lid to the toilet, it cannot make a single sound or she will do it over and over again until it's completely silent. I count down from 5 as she lathers up her hands and then down from 10 when she rinses her hands. I started adding the countdown to her routine because she would take so long to do any given task that it kind of moves her along. But now it's a rigid part of the routine. That's the hard part about implementing something--it often becomes a requirement in her mind.

Putting on shoes and socks is a real chore. June has to tug on each corner of her sock three times before she puts it on, and then if the shoe doesn't feel right, we take it back off and put it back on and she has to tug again. I love summer and sandals! 

The answer to these behaviors may seem simple--don't put up with it. And that is definitely something we work toward. But you pick your battles because there is a lot of battling to be done. It's helpful for me to remember that June doesn't do any of these things to be defiant, but rather does these things to satisfy a need in her brain. When we try to break her of a habit, it's like if someone were to tell you that the color red is now going to be green and you just have to deal with it. It's hard.

Crying about wearing pigtails. So I offered to change them. And then she cried that she wasn't going to have pigtails.

Q: Does she have meltdowns?

A: Yes, occasionally. She will bite, hit, scream and freak out sometimes if she doesn't get her way. My husband is SO good at taking care of these situations. He doesn't give in but he's also really calm. 

And yes, lots of 5 year olds have tantrums. I think sometimes she's having a 5 year old tantrum and other times, she's having an autism tantrum.

Q: Does she flap her hands?

A: A lot of kids with autism "stim" or exhibit self-stimulatory behavior, such as hand flapping, as a way to comfort themselves. June is not a huge stim-mer, but she does chew on her blankie, and she does splay her fingers a lot. She also holds her hands awkardly or pulls back on her index fingers with her middle fingers, and it really creeps me out and I tell her to stop. You can see a little of what I mean here:

Q: So what will her life look like?

A: She will have a great life, but I don't know the specifics. She obviously needs a lot of support now. But there are plenty of kids with ASD who go on to live independently. There are a lot who don't. I read a stat once that only about 17% move out of their parents' house. That's a pretty interesting number though since I feel like the spectrum is so much bigger than it used to be, and I wouldn't be surprised if a lot more kids on the spectrum these days will be independent. 

We are just taking it a day, week, month at a time.

Q: What are some things I shouldn't say to someone with ASD or to the parents of a child with ASD?

A: Overall, I think our society is super easily offended and I try not to be. I have said plenty of dumb things to people that I have regretted later, and I try to keep that in mind as people ask me questions. People really want to be helpful and supportive and would die at the thought that they are being insensitive to your situation. 

That being said, I really don't enjoy a few things. One is when people tell me that June's diagnosis is wrong. I completely understand the initial incredulity that June has ASD. But if a person will spend enough time with her one-on-one (say 10 minutes), they will definitely see it. This is especially true if (1) you ask June to complete a task independently and/or (2) you also have other kids her age around and can see the marked difference. So I understand the initial "I am surprised that she's on the spectrum" as opposed to "I know someone with ASD, and June does not have it." I don't want to convince anyone of anything, and I won't.

Yes, she is high functioning, and that is a huge blessing! I am very grateful! But, we still struggle a lot.

Some great words someone once said to me: If you've met one kid with autism, you've met ONE kid with autism. Meaning it looks different on every kid.

I've learned a lot from June. I love her so much. She is my buddy. She loves life. She loves art, music, swimming, singing, dancing, cooking, chocolate, pancakes, playing with friends, and SHE LOVES dogs. 

Q: Heather, why are you so long winded?

A: I don't know, but I received checkmarks instead of plus signs on all of my elementary school report cards for talking too much.

The End.