Sunday, April 29, 2012

Not working.

JT has been on Strattera for ADHD (technically not a separate diagnosis, just part of autism) for roughly 3 weeks.

Unlike the risperdal, this medication has not been a life-changer.

In fact, teachers haven't seen any difference.

And we've seen some side effects that are concerning (now that he's off of it for a few days, those have disappeared, thankfully).

This means we go a step up in the medication of ADHD world, otherwise known as stimulants.

So we'll have a cardiology appointment for JT, complete with EKG and echo to make sure he didn't inherit my murmur or arrhythmia (both which would make it dangerous for him to be on a stimulant).

I know he needs it. I know that is the only thing holding him back. He needs to be able to focus to learn.

We do what we have to do to make sure JT fulfills his potential. And we trust his doctor. That itself makes the decision to move forward easy to make.

Rewarding kindness.

JT's class has been nothing short of extraordinary this year. Those little ones have helped him without being asked to, going out of their way to make sure my baby is okay. I wrote about them after I saw first hand how precious they were.

I am a big fan of positive reinforcement. Otherwise known as rewarding good.

So I want to thank these kids for their kindness. Encourage them to be kind in the future.

I've decided I want to send home thank you's to the parents, telling them how awesome their kids are and what good people they are. I also want to send in cupcakes or another treat as a direct thank you to the kiddos.

Also, two days ago, Audrey asked me if she could wear JT's Special Olympics t-shirt to school. Confused, I asked her why she'd want to wear his shirt. Her response? "Because, mom, it shows JT has autism, and I want people to know I appreciate that people appreciate my brother."

It appears Audrey wants to encourage kindness as well. Such a sweetheart.


JT lost both his front teeth this week - he's so cute!

Friday, April 27, 2012

Special Olympics

On Wednesday, JT and I headed down to Charlotte Country Day School to watch the Special Olympics.  JT is too young to participate (age 8 and up), but they had plenty of games and activities set up.

JT's favorites were putt-putt and the balloon animal making stand (although he got a Ninjago sword, not an animal ;) ). He watched a few races, clapped and overall had a good time. He really loves his teachers - he would not let them out of his sight!

Here's a few pics of our outing:

Tuesday, April 24, 2012

Coming clean.

Most days I wake up and I'm fine with everything. With life, with autism. Some days I'm just not.

While most of my blog is positive, I try to keep things real on here. So here goes.

It comes down to this:
I'm jealous.

Jealous of all the parents who get to wake up every day and just get their kids dressed for school without squirting a syringe of antipsychotics into their child's mouth.
Jealous of the parents who don't have to repeat that routine plus a pill for ADHD symptoms at night.
Jealous that other children live such easy lives, and mine was dealt the hand he was.
Jealous that JT has to rely on the kindness of other children to get through his day.
Jealous that he didn't get a normal childhood, instead spending thousands (literally) of hours in therapy.
Jealous that other parents don't have to worry about every small setback as a possible regression, or worry about losing years of progress in a few days.
Jealous that other parents don't have to worry about whether their child will live independently in the future.
Jealous that other parents know nothing about special needs trusts or other financial ways to set up a child with a disability.
Jealous that other parents got to enjoy their babies, while I busted my butt just to help mine reach milestones that other kids met months or years before.
Jealous that my kid works so hard to learn things that other kids pick up naturally.

There are so many more, but you get my drift.

I know jealousy isn't a good thing.

But some days it's just hard.

Sunday, April 22, 2012

I believe...

First Signs.

Besides the question of how I think JT ended up with autism (which I explained here), people often ask what the first signs were that JT had autism.

JT actually had signs from birth, although there is absolutely no way we could have known it was autism. Looking back, however, I can see it.

In the hospital, he wanted to stay in the little bassinet. No matter how much I tried the skin to skin contact to calm him, I found he was only happy when I wasn't touching him. He wouldn't nurse: I had nursed Audrey until she was 13 months old (so I had just weaned her 3 months prior to his birth), so I knew what I was doing. He wouldn't latch, period. He would chug those little bottles of formula, though, so I knew he was hungry. If I tried to wait it out, so that he was super hungry and maybe he would nurse, he would scream until he would get the bottle.

He was an easy baby. He just wanted to be in his room, with the lights out, door cracked shut. He woke 2 times a night from the 3rd day on (when he was released from the hospital and we came home). My family had purchased a $250 co-sleeper bed for him to sleep in, so he could be close. He flat out refused it, screaming until he was in his crib, lights off, door cracked. He wanted that middle of the night bottle and to be immediately returned to his crib. I told my doctor at 6 weeks something was wrong, because he was 'too easy'. I was half-joking - remember I had a 16 month old at home, so I knew what babies were supposed to be like. He told me to be thankful, he was a dream baby. Enjoy him.

JT had several ear infections (9) his first 15 months of life. We wondered why he wasn't talking, and upon completing a hearing test, we found he had 80% hearing loss. We had tubes put in soon after (he was about 16 months old), expecting his language to take off.

It didn't happen.

I thought maybe the hearing loss was still the issue (sometimes it takes a while to resolve) until I discovered one day that I could blow up a balloon in another room (one of his absolute favorite things) and he would come running. I didn't know then it was autism, but I knew it wasn't hearing loss. I was told boys are late talkers, that he would start when he was ready. People told me stories of sons, grandsons, cousins' friends nephews who didn't talk and suddenly spoke in sentences. Everyone said not to worry.

Then at 21 months, I picked up a People magazine with Jenny McCarthy on the cover with her son Evan. I honestly grabbed it because I had no idea what autism was and I thought Jenny was hilarious.

I remember coming home from Kroger and later that night picking up the magazine, just expecting a good read.

My heart absolutely dropped as I was reading it. I looked up from the magazine to see JT flapping and toe walking as I was reading Evan's symptoms. I ran back to my computer and googled 'autism symptoms'. I cried as I checked off almost every single one.

Toe walking. Hand flapping. Lack of eye contact. No pointing. No joint interest. No imitation. Preferring to be alone. HUGE tantrums beyond anything I'd ever seen. Lack of any language. Lack of response to name. No pretend play, instead using toys inappropriately - mostly spinning wheels and playing with door stoppers. Lining up toys. Sensory seeking - jumping off tables, running into things - without any indication of fear of danger. Mouthing everything. The W sit. The list went on and on.

The next day I made an appointment with our awesome pediatrician, who got us in the next day. When we saw him, and I pointed it out, he made us an appointment with the team at Arkansas Children's Hospital to get a full evaluation. I found out later that the same day he wrote 'probable autism spectrum disorder' in JT's chart. He was kind, understanding and positive. That in itself helped our journey start off on a positive note, which I think has helped all along.


My little man and a precious classmate (one of several who went out of their way to help JT during the assembly, and who go out of their way to help him every day). 

I'm trying to figure out how to thank these kids and their parents for being such wonderful people. We see so much negative that I feel like we should really encourage the positive, and let them see what a difference they are truly making in our lives.

Warms my heart. 

Friday, April 20, 2012

Awards and such.

Today The Hubs and I attended a "Right Moves Rally" at the kids' school. It was basically a big assembly where awards were given out to students for "right moves" - academics, attendance and citizenship.

Each teacher gave out 3 awards: Outstanding Reading, Outstanding Writing and Outstanding Math.

They split them into grades, so first up was 2nd grade, 3rd grade and the AU (autism) classes. While JT is based in the AU classroom, he is in the mainstream K class for assemblies and most of the day.

Audrey got the Outstanding Reading award, and got a citizenship award. She was all grins up on stage, and was so excited to see us.

While taking pictures of her in the entryway, we saw JT's class. His friend from the book fair saw us and was so excited to see us :)

JT was so happy to see us (he spotted us and exclaimed, "That's my mommy and daddy!"), but he stayed in line like he was supposed to. His (mainstream) teacher told us we should stick around (we were anyway) because "JT is actually getting an award."

We went back to our seats, and the K and 1st grade students filed in for their assembly.

JT had a citizenship ribbon, so we figured that was his award.

When they started calling up the Outstanding students for his teacher's class, guess who was first?

JT got the Outstanding Math award for his mainstream K class!!!

It was so amazing to watch our little man get an academic award.

The absolutely beautiful part of it all was watching how his classmates took care of him. I saw at least 5 different students helping JT. Helping him to his seat, tapping him when he should stand, whispering to him when it was his turn, and giving him a hand to get up and walking him to his spot in line. They all seemed to truly like JT and to really want to help him. It was so precious to me.

Score 1 for both our babies today. SUPER proud parent of two award-winners!!!

Thursday, April 19, 2012

The beginning.

People - mostly expectant mothers and new moms - often ask me what I think caused JT's autism.

The truth is I can't be sure. But, looking back, there is a single memory that I strongly believe is related to it.

I have to tell the backstory to get to that point, though.

When I was pregnant with JT, I was put on bed rest at 21 weeks due to contractions. I had a year-old child (Audrey, of course) and she had needs, too. I wasn't as 'good' as I was supposed to be at following the doctor's orders.

I continued on, and around 32 weeks, JT's movement significantly slowed. In office, they had to use the buzzer to get him to move on the kick count machine. At that point, I had to start tracking his kicks, ensuring he met a minimum count or I was to report immediately to the hospital. Nothing appeared to be wrong on the ultrasound, he was just a big baby and I had a ton of fluid (twice the normal amount).

At 36 weeks, he didn't make his count.

I reported to the hospital, where they also found I was dilated to 4cm.

The labor was okay until they broke my water. JT's heart rate would slow to the point it was dangerous with every contraction. Luckily, I hit 10cm shortly, they were calling down to the OR for a c-section otherwise.

He came out with a double neuchal cord. In other words, it was wrapped not once, but twice. The only thing that saved my little guy was he had managed to work a tiny hand under the cord.

A single memory haunts me:
After delivery, before JT was taken to the special needs nursery (his sugar was messed up, he had fluid that had to be pumped from his tiny belly and he was grunting when he breathed), I looked at the delivering OB/GYN and asked, "Will he be okay? Is he going to have any problems from this?"

She looked at me before walking out and said, "Only time will tell."

That response has stuck to me from day 1 of my sweet little guy's life.

All these studies that come out, the ones that apply to me, they make me feel guilty. But that single moment is where I always go back to.

Wednesday, April 18, 2012

Yay for reading!

This is our most difficult area with JT.

Lately he has been loving A Squirrel's Tale (Richard Fowler).

Then last night we bought him Lego City 3, 2, 1 Liftoff! He loves it, too.

It's so great that he's starting to enjoy reading. He's in a family of readers - The Hubs and I both love to read, and Audrey is reading at almost a 6th grade level and is buried in books constantly.

Go JT!

An emotional book fair.

Tonight we went to the kids' book fair at school.

As soon as we walked in, a little boy stood up in the hallway (he was sitting waiting for his parents) and shouted, "JT! JT! Hi JT!"

He ran up to meet us, and said hello to JT. JT said hello, then turned to us and said, "It's so-and-so" (my heart was about to explode, I didn't catch his name). He told us how JT is in Mr. Dussek's class with him sometimes, but is in a special class the rest of the time. The little guy asked JT about his Lego, JT managed a few responses, and then the little boy's older brother made him sit back down. 

So we go and get our books, and we're standing in line. This little girl appears out of nowhere, and JT starts giggling as she says, "Hey JT!!!" He looked up and said, "It's Mackenzie!!!" SUPER excited, and they waved to each other. 

He ran back up to say hey to her as we were leaving. 

Then a teacher (we have never met her, she's just another teacher in the school) was giving out leis to the students. Audrey grabbed one, and then the teacher pulled JT over. She asked him if he wanted one, and he said yes. She knew exactly how to handle him. Then she had him pick out a color, and made sure he got the one he wanted. 

So thankful for what their school is doing, because clearly they're doing something really, really right in regards to helping students understand and be friends with my boy. 

Apparently book fairs can be pretty emotional places!

Tuesday, April 17, 2012

What no one tells you about parenting.

I remember when I was pregnant with Audrey. I got TONS of advice and forewarnings. "Buy lots of diapers!" "Sleep when she does!"

Then after she was born. "Enjoy it now, it goes by too fast." "Just wait until she's old enough to ____."

What no one ever warned me about was other kids.

We're going through some big problems here at Audrey's school. Apparently several kids in the class have taken it upon themselves to torment her. First it was one little girl pushing her around (physically) back in December/January. That was addressed. Then it was a little boy saying horrible things about her to everyone, making sure she heard in late January-March. Then he joined forces yesterday with a group of 3 known troublemakers to continue it.

Audrey came home yesterday sobbing. She wanted to know why, "So many kids at my new school are mean to me. Why don't they like me?" How the hell do you answer that question?

I emailed her teacher. She called and emailed me back. They are taking it very seriously, it is a big deal, and they know what's going on.

The kids have all been separated. They cannot even play together at recess (the troublemakers, and they have to stay away from Audrey). Their parents have been called. The teacher let them have it, talking about how we treat others and such. The guidance counselor is coming in today to their class to further 'help'.

The teacher is very apologetic. She assures me Audrey has done nothing wrong, nothing to become a target, that she is the sweetest little girl and so very smart and friendly. That somehow these kids just 'chose' her.

Audrey is begging to be transferred to a TD-specific school (talent development, the gifted program she is now in). We decided to leave her at her current school, where they cluster the gifted kids (so they put all of them in one classroom, or split them into two large groups if need be, so there's 20 in 2 different rooms). But we know she'll see these kids at recess and such.

How do you handle that as a parent? I'm all for confronting your problems, but this isn't Audrey's problem to confront. She's doing everything right and being thrown to the wolves every day. Then I think about the highest-risk to be bullied, JT. And I think I can't let this school slide regardless because he's only 2 years behind her, and I don't want him going through this.

For the next few weeks, we're watching closely to see how this is handled. If they can't address it in a satisfactory manner, we will be putting in our request for Audrey to transfer to another school. It will be hard on our one-car family to get everyone everywhere, but if I have to sit in the car for an extra hour a day to ensure Audrey isn't tormented every day, that's what I'll do.

I've said it before and I'll say it again: bullies SUCK.

Tuesday, April 10, 2012

Guess what?

Today is my first day blogging at Hopeful Parents!

It would be awesome if you'd go take a look at my post, Stepping back. 

Saturday, April 7, 2012

Spring break & progress.

We're nearing the end of our spring break, and we have had so much fun. Crafts like wave bottles, permanent sand sculptures, gel bottles and sand art. Daily visits to the gym (the kiddos love the child care!). Lunch with daddy.

Of course Audrey also had allergy testing - the one with individual shots (not the panel) - despite the pain, she survived 25 separate shots! JT saw his new doctor and is starting medication for ADHD.

Best of all, JT swallows pills now! The new medicine is only available in pill form, and can't be broken in any way. He said he would, and he did! Day 3 and he did it in one sip :)

He's way more talkative, he's got some new, big words - tonight he said something smelled 'horrible' (it was Audrey, and after we cracked up we convinced her he was messing around).

JT has suddenly become Mr. Social. In Target Friday he made everyone say hi to him. He would jump out and say, "Hey there!" - sometimes stepping in front of carts to ensure they responded. Then at Dillard's he followed up his 'Hey there' with "I gotta find my way outta here!" It was funny, but we have to help him make it more appropriate. Talking to strangers is not always okay.

Tonight he randomly asked me to cut his nails. And cut his hair. Both amazing.

Also, at another appointment, he asked to have his blood pressure taken. We have never been able to get him to do that!

I'm so excited for him to go back to school and see if his teachers notice his progress!

Sunday, April 1, 2012

Letter to politicians.

Dear {Representative, Senator, President},

As you may or may not be aware, today is World Autism Awareness Day.

Also, the CDC has released the latest statistics on autism. 1 in every 88 children born in 2008 have autism.

While this number is striking, what is more interesting is that this number is 4 years old.

According to CDC statistics, autism has been rising at an alarming 13% a year (on average) since 2000.

Based on these numbers, the statistics for this year is 1 in 54.

1 in 54. Take a moment to think about that. That is nearly 2% of our population - of your constituents - that have a disability.

Now I would like to introduce another statistic. One that is difficult to stomach. Did you know that only 70% of autistic adults are able to live and function independently as adults?

I want you to think ahead 10 years and consider the numbers. That means that 70% of the 1 in 54 - 1 in 77 (more than 1%) of our population in the United States will be on disability for autism alone. That does not include other physical, mental or cognitive disabilities.

Our great country is currently underfunding research in this disability. Currently, the NIH is only providing 0.6% of its' funding to go towards determining the causes and treatments of this disorder.

Not only that, but many states refuse to provide safeguards to ensure that autistic children's insurance provide adequate services (which, by the way, could cut lifelong costs by 2/3, according to statistics provided by Autism Speaks).

Please make April more than Autism Awareness Month. Please prove that this country is committed to providing answers and help to families living with this disorder everyday.

At 1 in 88, we do not need simple 'Awareness'. We need help. NOW.

{Kate Duzan}


Our autism.

Today kicks of Autism Awareness Month...

So today, I'll talk about 'our' autism.

Our autism is a funny little boy. He is ever-moving, dashing by in a flash on his tiptoes, humming his happy autism noise.

He is loud, but scared of loud noises. He hates the vacuum, requiring us to take him outside, for a ride, anywhere but here when we use one.

He is a very selective eater. At times, he is down to very few foods he will eat. At one time about a year ago, he was eating only popcorn, and I was giving him whole chocolate milk laced with infant vitamins.

Once a hater of all things requiring a pencil and paper, he loves to draw, write, color. He brings home the funniest drawings from school every week. And the sweetest. Last week he brought home a picture of me and him together. It melted my heart.

He is kind. He loves to tell us how 'good' we are, that he loves us. He loves to give random, unexpected kisses on arms, legs, cheeks... anywhere but the mouth.

He loves to script. I often know exactly how his day went by listening to a play by play recording from the backseat. I hear many Phineas and Ferb episodes (complete with "There you are, Perry!").

He loves old school cartoons. Inspector Gadget. Woody the Woodpecker. He also loves Wild Kratts and other nature shows.

Legos are his deal. Especially Lego figurines. He has at least 50, and can tell you if a single one is missing.

Our JT is good at math. At science. He is learning (quickly) how to read - he loves words. He doesn't understand social norms and how to make friends. And he wants them.

His favorite color is usually yellow. Sometimes red. His favorite food is cheetos. And brownies (hello, typical kid things).

Our autism sometimes causes a scene. Squeaking angrily at a checkout line that is a bit too long for him to handle. Screeching at the thought of having to do something that doesn't fit in the plan in his mind. Having to do one more thing when he is (and uses sign language to remind us) "All done."

He loves the mall. He hates brushing his hair. He likes baths, but doesn't like water on his head.

He loves his sister more than anything.

He is our world.

Every child with autism is different. So, when you think about autism, remember that every story is different. But remember that these children - these 1 in 88 - these children are someone's world, just like our JT is.