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.

Wednesday, June 21, 2017

Happy Father's Day to the Best of the Best

Happy Father's Day to Dan the Man Jolley!

Father's Day at our house consists of getting to sleep in 15 minutes longer than usual and getting a present or two. I need lots of help getting this crew to church on time, so Dan doesn't get much of a break from that.

The girls and I made him breakfast in bed. I don't like breakfast in bed! Do you? Dan does, so we obliged. Gwen was cranky the whole time and cried as I sang "Happy Father's Day" to Dan. She screamed so loudly that he didn't even know what I was saying. Sounds about right.

Do yourself a favor and pick up a tube of biscuit dough the next time you are at the store and make yourself a bacon, egg and cheese biscuit. It's my fave thing at McDonald's, and the homemade version is also excellent.

I think Dan actually ate one of those sandwiches and the girls commandeered the rest.

This card was especially fitting because one of his presents was matching ties with Harris!

Dan is pretty hard to predict sometimes. He can be really into cheesy stuff and the next second he is rolling his eyes at something cheesy. So I wasn't sure if he would be into matching ties. And he kind of wasn't. Haha. But he did it to humor me.

When I saw that his initial reaction was somewhere between "meh" and "this is embarrassing", I put on my best mom voice and sang out to him, "If any of the other dads make fun of you, they're just jealous!"

We then discussed how inaccurate that statement is most of the time. My mom used it on me a lot, and I look back now and think, "No, Mom. I don't think the popular kids are secretly jealous of how uncool I am and how dorky my clothes are. I think they really are just having a good time laughing about it."

But I know I'll say the same thing to my kids.

Dan the Man with his children. This is Gwen's most cooperative-looking photo of that day, followed by a close runner-up:

I should frame this.

Speaking of frames, his other present was this nice frame for his diploma.

For dinner, I made coconut shrimp. I was really frazzled putting it together because I was also making a new dessert at the same time. Unfortunately, this resulted in my forgetting to take the shells off the shrimp. It was horrible. And Dan just choked it down with a smile anyway because that's the kind of guy he is. Also, he's really used to choking down horrible food around here.

It's really quite symbolic for Father's Day because the kids and I started choking the life out of Dan when he became a father.

Happy Father's Day, Dan! We really do appreciate you even if Father's Day feels like every other day at our house with loud, cranky kids and an old, cranky wife. Love you!

Tuesday, June 6, 2017

Dan is Thirty, Flirty, and Thriving.

First person to name the movie in the comments section gets to clean my house.

Dan turned the big 3-0 this May, and I'm happy to have him join me in the thirtysomething club. The club of falling asleep during the opening credits of movies, getting excited about shopping at Aldi and driving a minivan. Though I've been doing those first two since I was 16. I also like Lawrence Welk. 

Dan's big request for his birthday was chocolate chip cookie dough cheesecake (from Mel's Kitchen Cafe), and I have to say--I did a pretty good job. It was delicious. Also part of being in the thirtysomething club is counting your calories, and this baby clocks in at 600+ calories per slice. If you cut it into twelfths. So we invited another family over to help us devour this beauty so that we wouldn't be able to ourselves.

I know, I know. It's cracked. My cheesecakes always crack.

Happy Birthday, Dan!

The best birthday present Dan received was his sweet baby Harris and also this sweet baby which came in the mail:

Five days after Harris was born, Dan had to take his final finals. Ever. Luckily, his professors heard about the baby and said he could take the tests from New Jersey instead of having to fly back down to Florida for them. Unfortunately, this meant that he would also be missing graduation, which was the day after finals. Dan was bummed about this, but I was so excited. The thought of having to attend a graduation days after giving birth really did not appeal to me. I feel like people always look stunning at graduations, but my postpartum wardrobe plan consisted of cutting a hole out of one of my bed sheets to wear while also attempting to watch the entire outdoor ceremony from the confines of my car. But I was saved!

My BFF Linz came and visited for a few days at the end of May, and we had a fabulous time. I am SO BAD at taking pictures when people come to visit. Especially Linz. Because we are too busy having fun. And we are quite the pair. There are very few people who would be okay with flying across the country to help me with my crazy kids, and she has done it quite a few times. There are also very few people I can ask to watch A Walk to Remember with me for the sole purpose of poking fun at it, but Linz will do that too. She's BFF material for sure.

This was right before my crew headed to our town's little Memorial Day parade. The girls wanted to wear costumes, and so we went with it. It rained like crazy the entire parade, but it was one of the best Memorial Days I've ever had. Because at the end, the town follows the parade to the local VA hall where there is a flag and prayer ceremony to remember those from our town who have died in service to our country. They read each name and rang a bell, and I felt the Spirit so strong. I loved it.

And then looked over at my girls and remembered that we let them wear Halloween costumes. Whoops.

June wore bat wings that day. Wings I had ordered special so that she could wear them on "Favorite Book Character Day" at school. Her favorite book is about bats, and we read it every single night. Black shirt, black pants, bat wings. Easy, right? Except that after we attended the Memorial Day festivities, the bat wings went missing.

Friday was the big day, and by Thursday night I still hadn't found them. June was REALLY upset about this, and it stressed me out. Friday morning, I gave the house one last look but couldn't find them. I finally persuaded June to dress up like another book character, Pinkabella.


Not to be left out, Gwen also dressed like Pinkabella that day.

I put June on the bus and was relieved the ordeal was over. The second I walked back through the front door of the house, I knew where the wings were. The one place I forgot to look. I walked right to my closet and looked on the top shelf, and there they were.

I'm tired, folks.

Lastly, I try to send a pic of the girls to their grandmas on the regular. But my subjects are ridiculous to work with.

The following series could be aptly called--Gwen: A Case Study.

and "To the Left, to the Left"

"June Leaves the Family."

"Let's Go Spend a Bunch of Time in the Car Together."

"This is the Best We Can Do."

"Harris is the Only Willing Participant."

"Please Let Me Be Anywhere but Here."

"A Girl and Her Dog."