Why Our New Dr Thinks I'm Nuts.

Also known as: Another miracle in our daily lives.

We had to go to the doctor yesterday - the kids and I are all sick.

I had to find a new doctor, and so I found an internal medicine and pediatrics place, so we're all able to see someone in the same building. It makes things way more convenient when you don't have to go all around town when you're sick, and when one of us is sick, all 3 of us usually have it.

I told the nurse JT has autism, and she said, "Just let me know if I cross one of his lines or need to do something different." WOW. She couldn't have said anything better. Seriously, I was impressed from minute one.

JT stood on the scale. He stood still while she got his height (this was not possible the last time we went, he was too freaked out by the sliding metal behind his head). We were able to get his weight on the first try. It's like he remembered that he couldn't wiggle or touch the walls (why it took so long last time). He didn't try either at all this time.

So we go back to a room, and he plays nicely while the nurse is having to enter information for all 3 of us. It's not a short process - there's so much medical history, etc that they have to enter.

The doctor comes in, and JT waits while he listens to Audrey's lungs and looks in her ears. She gets down, he says, "My turn!", jumps up on the exam table. He complies when the doctor asks him to breathe in and out. He lets him look in his ears like he's never had any issue with it.

At this point, unable to refrain, I say, "This is a miracle. You have no idea. 6 months ago none of this would have happened."

The doctor looks at me like I'm freaking crazy, and I explain he has autism and before he would have been out of control and unreachable. I think he thought I'd lost my freaking mind.

He was really nice, though, and I was really happy with the practice. Good to know we have a medical 'home' now, so when we catch more bugs we're set with a good doctor to go to.

To add to the miracle, we went to Walgreens afterwards, where there was a mixup with needing a different type of prednisone. It took my doctor 30 min to get back to the pharmacist, and again, JT was a rock star. No fits. He was very wiggly and spinny, but happy and he was very well-behaved.

I should mention our adventure started at the dr at 1:45pm, and we left Walgreens at 4pm. That's a long outing for the boring stuff we had to do for kiddos.

As for now, hoping the antibiotics and prednisone kick this plague out of the three of us!

Dear 2011.

Dear 2011,

I want you to know you've been my favorite year so far.

My daughter turned 7. My son turned 6. We celebrated 9 years of marriage. I turned 31. The Hubs turned 32. Nothing in there is spectacular, but yet we're here, we're healthy, we're a happy family... in this day and age, that IS spectacular in itself.

That's not to say it was all easy this year. We faced the biggest decision in regards to JT's autism and treatment that we've faced. We'd been avoiding it (they told me at his diagnosis he'd need meds... not 'he'll probably need meds', but 'he'll need meds'). Looking back, that was one of the hardest decisions we've made as a family. Medication is a serious subject. But I now know we undoubtedly made the correct choice for us. It has changed our lives.

We dealt with bullying of both Audrey and JT, and were happy with the response of one school and at least semi-satisfied with the response of the other. Either way, neither of our kids are tormented now, nor are they broken because of it. We've had some valuable discussions about bullying and what that says about the bully - and tried to set up a plan of action if it ever happens again. It happens far too often now, to far too many kids.

We've seen JT go from an entirely self-contained class to now only having two 'blocks' (social studies/science and english/literature) where he's NOT mainstreamed, and he has no aide - he's doing it all himself! He's made a real friend. He's gotten notes from kids at school. He's finding his place. He is one astonishing little boy.

Audrey's testing has shown that she's even smarter than we thought (which is pretty freaking smart). Her math benchmark was 100%. She was above grade level in everything. Her reading? At a 6th grade level. And this is a kid that will fight tooth and nail to NOT do homework or read... Thankfully, Captain Underpants (another 2011 discovery) is a new favorite - but she's almost done with the series. Frantically trying to find a new 'friend' for 2012! Her artwork has gone from 'that's cool' to 'that is AMAZING'. We have to get her in art classes, because for a child her age to draw with perspective and to be able to replicate what she sees so perfectly... she needs to explore that talent.

The Hubs got promoted. He's got an awesome store now, with great people. He's still good at what he does, and enjoys doing it. You really can't ask for more in a job.

I got a job (YAY Starbucks!). They helped me transfer, even though they didn't have to. I get free coffee. They have awesome benefits. And I get free coffee :)

As 2011 comes to a close, I can say we're in a really, really good place. Our kids are doing fantastic. We're doing fantastic. Our family is doing fantastic. Everything really did turn out okay...

So, thank you, 2011.

I can only hope that 2012 brings us more of the same :)

Special Needs, Education and 'The Line'

This story recently has made headlines:
School accused of putting autistic student in bag

Basically, a teacher and aide took an autistic student, and as punishment, put him in one of those drawstring bags they have in the gyms at school, drew the string up and left him in there until his mom showed up.

What?!?!?

You read stories like this one all the time. Autistic or other special needs kids getting restrained, secluded, bizarre punishments being doled out...

How does this happen?

I understand some children are hard to handle. They are not like 'typical' kids all the time.

But at what point do teachers, administrators, caregivers decide: THIS child is less than the other children.

Would a regular student EVER be placed in a gym bag, drawn up, and left in the hallway for their mother to collect? Then why is a special education student? Are they less human? Less worthy of being treated humanely?

Where is that line?

That line that says, "It's okay to do this to THIS student, but not THIS one." The line that is drawn somewhere based on 'normal' versus 'special education'. What criteria are used to decide that what is cruel for one student is not for another?

Do they not think that kids with disabilities have feelings? That they are aware?

Or are they just taking advantage of a child that can't fight back?

These stories leave me feeling disgusted at the systems involved. How could anyone possibly defend this? Would they put their own children in bags? CPS would remove them if they did, yet the schools are defending the abusers.

There should be absolute outrage over this. We got rid of corporal punishment in (most) schools, because it is a parent's right to discipline their child, and some consider it cruel. Who would NOT consider restraint, seclusion, tying a child up in a bag CRUEL?

So. Depressing.

If you have a moment, there is a petition on Change.org. Please go and sign it.

Papa's visit

My dad came to visit!!! He got here Tuesday, and sadly had to leave this morning. We wish he could have stayed longer!

While he was here, he got to spend a lot of time with the kiddos, and got to see them open up the Christmas presents that he and Ginny got for them.

The last time we saw him was August of 2010, so it's been way too long. He hasn't seen JT since he made his huge jump in progress. Last time he tried to keep JT, and the 30 minutes he had him were not good (JT screamed the entire time). This time he kept the kids several times for a few hours (I had to Christmas shop, work, etc) and they were both angels for him. Definitely made me happy to see that kind of progress! Not to mention the talking, conversing and interaction that he's capable of now that he wasn't before... Just a different kiddo!

I loaded him up with plenty of coffee before he went home (a pound a week is too much coffee for one person to drink!), so he might not sleep the next 6 months...

First babysitting adventure

Went WELL!!!!

The Hubs and I both had to work last Sunday, which meant the kids didn't have one of us to watch them. That's never happened!

When we moved to Charlotte, The Hubs told me he had an aunt here that was so sweet and awesome, and I had to meet her. He met up with her while he was here alone, and told me that his cousin (her daughter) was so sweet and babysat, and thought she would be awesome with our kids.

So, our kids stayed with The Hubs's (I guess OUR) aunt Cindy, uncle Jerry and (Z's cousin) Kate (awesome name :) ) - and they had the best time ever.

They came home so excited and happy, and they ate square pizza, went to the lake and (both kids) came home with painted fingernails (BOTH were so excited!)... Seriously, they were SO happy!

It is so freaking awesome to live close to family, and hopefully they'll be willing to babysit again for us.

Considering no one has watched the kids in 6 years, this is crazy cool!

YAY!!!!

JT school update (it's long).

Well, we're closing in on two weeks of school here in the Charlotte-Mecklenburg School District. Crazy!

While I'm completely in love with this school district, it didn't start off so well.

Before moving here, the placement coordinator told me based on what I told him over the phone and via email, JT would be placed in a resource type setting for all academics and mainstreamed for all the other stuff - recess, specials, lunch.

So that's what I was expecting the first day of school.

When we dropped them off the first day, JT's new teacher, Mrs. G, picked him up in the office, and the secretary walked with us to take Audrey to Mrs. W's class. After dropping her off, The Hubs asked to just walk by JT's classroom so we'd know where it was.

So we walk down another hall, and the secretary says, "Here are the AU classrooms." I responded, "Okay, but where is JT's classroom?" Confused, she turned around and said, "JT IS in an AU classroom."

If you want to know what he AU program is, I posted about it here, but it comes down to a self-contained classroom that is NOT standard curriculum and kids CANNOT get a diploma if they are taught in that classroom. NOT. COOL. JT was on standard course of study/curriculum in Cary, and is so freaking smart it's crazy. There is NO reason he shouldn't be learning the standard curriculum. Obviously I have a big problem with JT being assigned to the AU program.

After Mrs. G talked to me for several minutes (and was very apologetic, although she had nothing to do with the placement), we walked to the office where the principal talked with me for several minutes. Let's just say that I was not a happy camper, and they were very aware. I was nearing tears and screaming, but managed to hold it together and get my point across very clearly.

7 minutes after I left the school, the placement coordinator was on the phone with me. Apparently he wasn't aware that JT was on standard curriculum (which is ridiculous, because if he WASN'T on standard course of study, it would be in his IEP, and he has no academic goals in his IEP because he hasn't needed them yet). He started out defensive, and I think we just realized we weren't going to agree. He closed by saying we were at a great school, and they would do great by my child. I told him his school district had already screwed my son, and that he had only been in their district 7 minutes, so I wasn't sure I was going to believe that.

Luckily, he was right about the school and the staff there. They are awesome.

They called me half way through the first day saying he didn't belong in a self-contained classroom all day. That he needed exposure to typical peers. Next day they put him in specials, lunch and recess with Mr. D's K class.

Monday, we had an IEP meeting. They want to add math into JT's time in Mr. D's class. Once he adjusts to that, then they will add in science and social studies. Last will be reading/literature. That's all that's left until he's mainstreamed. Crazy.

He's staying in the AU class as his base, but getting instruction in the other K class (so he's still diploma-eligible). If the regular K classroom learning style doesn't fit him, they'll defer to the resource room for his instruction.

But they're serious about getting JT into a mainstream environment a.s.a.p. Even though I liked our last school district, they couldn't compare to this level of commitment to get JT into a regular classroom.

I feel like our move was another step in the right direction. It seems like things happen for a reason, and I'm so glad we ended up here. I have a feeling JT is going to do some pretty amazing things here :)

Happy 6th Birthday, JT!

This post is late... We've been in the process of moving, and I haven't had an internet connection to post my regular corny happy birthday to my baby.

December 2nd marked JT's 6th birthday.

On JT's birthday, I look back at the last year, and all the progress he's made.

From 5 to 6, JT has had one unbelievable year.
-He potty trained (in one weekend, no less!).
-He started speaking in sentences regularly.
-He started Kindergarten.
-He made his first real best friend.
-His behavioral issues all but stopped.

There is really so much more, but 5 was an amazing year. I can only hope that 6 will be as good as this last year has been!

Happy birthday to my sweet momma's boy.

Thankful.

Today is Thanksgiving.

I could go on and on about all the wonderful things I'm thankful for; topping the list would be my awesome husband and amazing kids.

This is the first holiday in 12 years The Hubs and I have spent apart, and while I was/am a little (okay, more than a little) bummed about it, a few wonderful friends had me over for Thanksgiving dinner. It was delicious, fun, and not lonely :)

And to add to the fun, today Audrey ate some stuffing, and JT ate blueberry pop tarts (he ONLY ate strawberry before, and anyone familiar with autism and eating can tell you how big of a deal it is for them to try something new - even if it seems small!). I'd call it a win!

I hope everyone else had a wonderful day, too!

Transfer!!!

I got my transfer through Starbucks!

I am super excited. I met this store manager on my last trip down there, and while she didn't think she had anything, by some miracle a spot opened up!

Here are a few pics of my new work home:

When it hits me...

Most of the time, I don't notice JT's progress.

I think it's a combination of trying to bury the old memories (I swear I have PTSD from the early days of aggression and non-stop screaming when he was 2-3) and just seeing it unfold slowly - so I'm not seeing the overall monumental steps he's taken.

Then every once in a while, something happens where I think, "Oh my God. This is INCREDIBLE!"

Yesterday was one of those days.

This time last year, we had a snowstorm here in Central NC. I had to take JT to the grocery store to buy groceries for the few days we'd likely be stuck inside. It was a disaster. He tried to knock things off the shelves, threw himself on the floor, even tried to toss a case of bottled water on the floor. To clarify, I never took JT to the grocery store back then because this was not uncommon. I just had no choice that day.

Fast forward to yesterday. I was in the bottled water aisle with a calm, happy JT. He was talking my ear off, giggling with his sister and picking out items for his lunch this week.

Suddenly it clicked, and I had to stop. What the hell happened?! I can't even explain in words how amazing and astounding JT's progress has been. Or how lucky we've been (because trust me, I know not everyone is as lucky as we are). But how, in one year, did we go from single words, not going in public, constant tantrums, anger, rage, diapers... to THIS? This happy go lucky, funny, ornery, smart little guy?

The enormity of his progress just paralyzed me for a moment.

And I said my thank you's to God, the universe, and whoever else played a part. I kissed his head, laughed at his silliness, and moved onto the next thing he wanted for his lunch next week. And I prayed that in a year, I can have that moment again.

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Consolidating...

I just imported Audrey's and JT's blogs to this one - trying to manage 3 blogs is just a little too much.

Just in case anyone still goes to those addresses, it will redirect to this blog, so it's all good :)

That means it'll be more convenient and less confusing when I post (no double posting, etc).

All done, promise I won't clog up your Blog Reader again!

Shots

:(

Today, JT had to get immunizations.

It was sad.

We've been behind for a while... even though JT never had a reaction to shots, I know there are a lot of moms of kids with autism who swear their kids had a reaction and lost skills or developed major issues. Yes, I've read the scientific articles that they don't. But I still question it in the back of my mind, and we've come so far... it would CRUSH me if we lost any of it.

But I know that if JT were to acquire any of the illnesses that vaccines prevent and I hadn't done it (which is more likely than a reaction to said vaccines) I would never forgive myself.

So today we braved the shots.

It was sad holding him still to get not one, not two, but FOUR separate injections :(

He was SO brave, though. He didn't fight me, he just cried a little and was a little distraught after we were done. No big tears, no fits, no meltdowns.

He finished, and was wiping the tears off his face, and turned around and said, "Now I not gon get sick, momma." Yay for understanding! He was listening when I told him we get shots so we don't get sick, and knew what was happening.

Then they brought him the treat basket, and he picked out two suckers, and promptly turned and gave one to Audrey.

I should probably mention that she cried for him more than he cried for himself.

Definitely feel blessed that I have two kids who love each other so much... so sweet.

Moving

Yet again, the Duzan fam is moving!

A few weeks ago, I got a note from Audrey's teacher about how she was getting 100 percent (or higher) on all her benchmarks, yet for the first time EVER, her scores on schoolwork were dropping - all from simple errors. She has also been super emotional at home, especially on weekends The Hubs comes. Then, JT's been having issues with panic attacks at school (hyperventilating and having to do breathing exercises), he's getting a little more trigger-happy with the moodiness.

I decided we needed to try to get back together as a family as soon as possible, since being apart was obviously having a pretty negative effect on the kids.

And... My boss agreed to a transfer, so we're all clear! I have to get in touch with store managers in the area so that I can get my transfer.

The Hubs found us a house in Huntersville that's REALLY cute.

I got in touch with the new school district, and with JT's recent changes in his IEP (did I mention he's now in circle/literacy time, library, art, music and PE with the general education classes, with his ONLY accommodation being sitting in close proximity to the teacher/materials? Yeah, that's my boy!), the coordinator we'll be going through said he would be recommending placement in their resource-type program AT HIS BASE SCHOOL!!!!!!!!!!!!!!!!!! That means my kids will be going to the same school, and JT will be mostly mainstreamed :) I don't need to even explain how happy that makes me (and let me tell you how excited Miss Audrey is that she can walk her brother to class!).

So, all that to say, we're going to be residents of Huntersville as of December 1.

A big, scary change, but we're hoping for the best :)

"20 train number"

I just walked into the living room, where JT was sitting with the iPad.

He had the YouTube app open, and had gone into the search function.

In the search field, he had typed in "20 train number".

He was looking for one of his favorites - a video called the number train.

Smart little man!

"20 train number"

I just walked into the living room, where JT was sitting with the iPad.

He had the YouTube app open, and had gone into the search function.

In the search field, he had typed in "20 train number".

He was looking for one of his favorites - a video called the number train.

Smart little man!

Proud!!!

Best buds :)

Yay!!!

Self-portrait

Names!

So some more cool progress... JT has learned our names, and can answer the question, "What is your mommy's name?" and "What is your daddy's name?" completely appropriately and with zero problems. He also answers "What is your sister's name?" because he thinks it's awesome to say Audrey's name, followed by - "that's sissy".

Way cool, because if anything ever happened and he got lost in a store or something, he would be able to tell someone our names and find us.

Another crazy milestone celebration - how freaking cool!

Moo & Baby Moo

The first toys JT has named :)

He saw Moo at Build A Bear and was set on bringing him home. He did
all the lady asked him to with the heart and stuffing (I was super
impressed, it sounds just like a vacuum, but aside from a little
reassurance from me that it was okay, you would never have guessed he
has sound/sensory issues!). Then he saw Baby Moo, and insisted that
Moo needed it.

He's sleeping with them (next post will be another pic!). So cute!

Welcome to the family, Moo and Baby Moo!

JT, Moo & Baby Moo

Cheese!

In the pool at The Hubs's hotel.

We came to pick him up, figured we'd swim :)

Still here!

We're doing great, just missing our daddy. One of my awesome friends kept the babies so I could work and The Hubs wouldn't have to be home last weekend, which made us miss him even more.

Thursday around noon we're heading to Charlotte to pick him up, he's spending the weekend here - YAY!

My job is awesome - it's really hard, but I work with some awesome people and enjoy it even with all the learning I'm doing.

Still hanging in there!

(shameless pic of JT kissing his sister included - he is on a lovey spree lately, we are loving it!)

HUGE accomplishment (to us, anyway!)

Saturday night, we were eating cheese dip (it's Velveeta, chili and rotel melted together).

As usual, JT wanted to eat the chips.

As usual, The Hubs said, "JT wanna dip the chip?"

NOT as usual, JT stopped, looked, walked back and DIPPED THE CHIP AND ATE IT!

He proceeded to eat TONS of chips and cheese dip!

I'm sure anyone who has dealt with eating issues is jumping up and down with me right now - this is HUGE!

Missing daddy.

The title says it all.

It's been a week, and we are missing daddy.

He comes home on Saturday night around 8pm, and stays until Sunday night at 5pm. This allows me to work... which also means that I don't see him most of the day Sunday.

We are doing well during the week, it's when he comes home and has to leave again that everyone gets really sad.

I can't wait for us to be together as a family again - this whole thing definitely makes me realize how much I took him for granted before!

Worker Fairy

He made a costume from a pink sequined hat, fairy wings and some Uggs.

Too cute!

School pic

School pic

That stinker looks angry, haha.

You can clearly see his 2 teeth missing on the bottom!

Chicka Chicka Boom Boom

JT sleeping with his favorite book.

He knows the entire thing by heart!

Other recent awesomeness:
-Grahsm is doing awesome in afterschool.
-Yesterday JT counted from 100 to 0 backwards, then said the
alphabet backwards. I was impressed!
-JT now independently gets his lunchbox, opens it, gets his
desired food out and opens that, too. Miss Tina and Miss Olive have
been working hard to get him more independent at lunch, and he's doing
great!

Onward and Upward.

A week ago today, The Hubs got a surprise. A BIG surprise.

He was promoted.

The Hubs is now the store manager at Northlake Mall in Charlotte.

He had been in Charlotte to talk to the DM on Monday, and LOVED it. The store, the mall, the area...

I was not so excited. Excited for him, but not so excited for me.

I have a job. That I LOVE. Just got it... after waiting years to go for it. AWESOME people, great manager... seriously, the perfect job.

And Starbucks policy is you can transfer... only after you've been there for 6 months.

So, I'm staying here in Raleigh with the kiddos until my 6 month (March 13), and The Hubs is moving to Charlotte.

The Hubs will be back every Saturday night and all day Sunday to take care of the kids since my work availability includes 'all day Sunday'.

The Hubs's first day was Tuesday. He is really excited about this new store and his new job. He's going to do awesome things there, I know.

We already miss him, but have a countdown to his next day home (yay Saturday nights!) and have a 'party' planned with all his favorite foods and things.

I'm balancing a job and kids - now I know how single moms feel. I am very, very thankful for my job dealing with my reduced availability, and we're getting all caught up on flu shots because we certainly can't afford to be sick this winter!

There are so many positives in this situation... I am deciding to look to those rather than the downfalls (because God knows you'd rather have your husband around than not!). In the long run, this is so good for our family.

This is the beginning of an all new journey for our family - wish us luck!

Let the games begin...

The sickness games.

Thursday I took miss Audrey to the doctor. I had originally called to get her established before winter, but she had a sore throat last weekend for two days that I also wanted them to check out. I had looked in her throat, and her tonsils looked huge to me.

Sure enough, her tonsils were 'giant', and the doctor ordered a strep test... that came back positive.

We're watching JT, so far nothing to indicate strep. Then again, Audrey had no fever and only a few days of sore throat...

With the introduction of this strep is the kickoff of the sick season. Fingers crossed the kids don't get sick very often this winter... I have to work!!!

Love this...

‎"I don't want pity. To pity me is to make me a victim. I want understanding. To understand me is to love me as an equal. I don't want tolerance. If I am tolerated, I am disliked in some way. I want respect as a fellow striving child of God - an equal in his eyes. I don't want acceptance. To accept me is to graciously grant me the favor of your company. To accept me is to marginalize me with the assumption that I am less than you. I am your peer. I am neither above you nor below you."
- Mitch Mayne

My hero!

Busy!

I haven't updated in a while...

Because I got A JOB!

I'm a barista at Starbucks. BEST JOB EVER! I am so excited to go to work, that my days off make me a little sad. The people are great, my boss is great, the work is (complicated but) fun. It's awesome!

The kiddos are in YMCA-run afterschool. They have one at each of their elementary's, so Audrey is at her school and JT at his.

They both LOVE it. The first day Audrey got mad at me for coming too early (I didn't get to pick a second activity, mom!) and day 2 JT kept trying to take me BACK to the cafeteria to play more. They both say it's fun. I walk in to get JT most days, and while he's not playing with the other kids, he's around them and watching closely. He has a ton of fun, and he's SO happy (before and after he sees me!).

Both kids LOVE their teachers, they are both doing fabulous, and academically are (still) ahead of grade-level, which makes this momma really proud. They are some smart little ones (and use it to their advantage!).

The Hubs is still enjoying his job, his store is still doing well...

JT has yet to have a behavioral problem at school. He has had no meltdowns AT ALL since starting the risperdal back in June. He now reminds us (GIMME MY MEDSINS) if we forget his dose at night. The stuff tastes nasty, so you know it must help him feel better.

We're doing fabulous, pretty much! Loving life!!!

All's well..

Getting awesome reports every day from school still, apparently JT is very well behaved (YAY JT!). He's smart, he's getting more independent (they're successfully getting him to open his own lunch and the bags inside :) ).

We have new neighbors, JT LOVES them. It is so cute to see him really interested in the other kids.

He's talking so much at home, and is so funny!

He seems to enjoy school, he is happy, and he is still making huge progress. Couldn't ask for more!

Kindergarten

JT loves his school. He seems to be adjusting so well - he even
asked to go see his new teacher today :)

Here he is on his first day of school (Thursday) with his teacher and
TA.

So cute!

JT & Beezy

Changes...

Today JT had his meet the teacher.



He seemed to really enjoy his time in the classroom, although he wasn't really as engaged as he usually is (he seemed a little overwhelmed, not really responding to requests/questions as quickly as he usually does). He did say "I scared" a few times, I think it was just a lot to take in.



I think it will be a great year. He liked his classroom. His teacher seems excited about the new school year and working with Mr. JT. His OT and ST were really excited, too. His little classmates are SO CUTE.



I am a little nervous about the change; going to Kindergarten is a big deal, and we're changing schools after being somewhere for 2 years.



JT asked for his favorite aid from prek today several times (Miss Lisa, if you are reading this, he almost cried because he realized he would not be at your school - he wanted to come see you and begged as we were leaving Reedy Creek today). He said he 'miss Michele' - his teacher from last year.



I am hopeful that he will adjust quickly to his new school and team, and that they will get to see the fun, smart JT that everyone else has fallen in love with.



School starts Thursday...

Silencing parents.

Why can't parents of autistic children have an opinion?



This video, made by Autism Speaks, shows the life of several families with autistic children.







It's not fluff, it's not pretty. It's honest. It's the life of many parents of children with autism.



And some groups of autistic adults are upset about it and demanding AS takes it down.



And I don't get it.



Why is it that parents of autistic kids aren't allowed to say their lives are stressful? Why are we not allowed to be upset that our children have a disability and life is hard for them? Why is it not okay that we are sad our kids struggle? Why can't we wish for better by hoping for a cure or treatments to make life easier not for us, but for our child?



No other groups are singled out like autistic children and their parents by the 'adult community'. Think of any other disability: CP, Down's Syndrome, blindness, deafness, physical disability... those parents are allowed to speak up and say 'You know what, life is hard. They're allowed to wish for a cure.



They're not made to feel MORE guilty by even more people.



The adults who can navigate life with small blips speaking for a group who have some major issues is like someone who has to wear a leg brace offended that parents of children in wheelchairs have hope their child will walk.



As a parent of an autistic child, I do wish for better. I wish my son had an easy life. I wish for a cure. I don't care if any adult on the spectrum is interested in taking that magic cure. That doesn't matter - if they don't want to change things, if they're happy the way they are, that's their business. Even if they find the cause and a cure, no one's going to make any adult take it.





I support Autism Speaks video. I think it's real life for many of my fellow autism parents and children, and their story deserves to be told - and publicized - as much as anyone else's does. I encourage both positive and negative stories: here at our house, we dealt with some dark times, and it's encouraging that others have come forward to share that experience so other parents don't feel so isolated and helpless. I also love the good pick-me-up - positive autism stories lift my spirits. There are room for both, and we shouldn't avoid talking about one over the other.

Whatchu doing?

JT is talking more and more :)



He comes up now and says "Hey _____, whatchu doing?"



or



"_____, you okay?"



and other similar questions.



He stops and waits for a response... it is SO cute!



He also enjoys playing chase/tag/tickle games and loves to say "I got you!" after he catches you or 'wins'.



He's started wearing his shorts whenever we have guests - particularly the little girls that moved in down the street. He blushed a few days ago when they ran back in to grab something after he'd taken his shorts off! First time I've *ever* seen him embarrassed!



He loves stealing people's seats and exclaiming "SPOT STEALER!!!"



Today our neighbor was over and JT was CRACKING UP messing with him stealing his spot.



Getting lots and lots of 'I love you' and 'I miss you', too - makes a momma's heart SO happy!

En Espanol

JT has been really into YouTube videos lately... and of course he LOVES the letters and numbers.



I had noticed he was watching French and Spanish number videos as well as videos in English, but figured he was just looking at the numbers.



I was wrong :)



Today he brought me his number blocks, and handed them to me one by one.



As he was handing them over, he said, "Uno, dos, tres, cuatro, cinco, seis, siete, ocho, nueve, diez."



Considering my Spanish is limited to Dora-taught words, I better start working on it... he's almost got me beat!

Playing at the beach.

At the beach.

Pizza

Too funny..

JT: Mommy, I want a pizza.
Me: JT, we don't have pizza. What else do you want?
JT: (thinks about it...) Another pizza.


Hmmm...

Another pic of the missing tooth!

Goodbye, tooth!

My little boy is growing up!

He came up and said, "Mommy, my tooth missing." and showed me. Sure
enough, the tooth he said was loose a few days ago must have been
really loose - because it's gone!

Silly boy!

He loves brains... and knows how to mess with everyone. Goofy boy!

Magic 8 Ball

Since we have no answers, and no way of knowing when the answers are coming... Audrey and I have resorted to using the Magic 8 Ball.

As a side note, Audrey loves the thing because she can ask a bazillion questions and it keeps answering her.

Got a question? Go play!

Vitamin D Issues

I got a call from my doctor Friday, a week after I had 6 vials of blood drawn - mostly because I hadn't had any bloodwork in three years, but these headaches/backaches/constant fatigue just weren't going away.

Turns out my vitamin D level is low. Not just low, but 'severely deficient'.

The NIH has a page on vitamin D here, where you can see the normal levels for adults should range from 30.0 to 74.0 ng/mL.

Mine was 6.

I'm on 50,000IU of vitamin D (prescription) M/W/F for six weeks. Four weeks after my last pill I have to have a redraw to see if my levels have improved. If not, we have to start trying to figure out why.

I've never had a vitamin D blood draw done before, but looking at the symptoms it's very likely I've been deficient for a long time.

If you haven't had a D test done, you definitely should. The statistics vary from 8 percent to 55 percent in estimates of people with a D deficiency... but your risk is higher if you're inside a lot, don't eat a diet high in vitamin D or have certain health problems (check here and here). It causes some major problems with your bones (makes them soft and easy to break, osteomalacia/rickets), headaches, energy levels, weight gain... and much more.

Kisses and I Love You's

Probably the best thing ever...

JT has started spontaneously telling me he loves me and giving me kisses :)

Yesterday, The Hubs asked him, "Do you love daddy, or mommy?"

JT looked around, and said, "I love mommy. I LOOOOOOVE mommy. I love mommy, I love mommy, I love mommy."

Then he came and gave me a hug with his little arms around my neck.

He is the sweetest little man ever!

Playdates

We've had a lot of luck with playdates this summer.

JT isn't done after an hour, screaming and ready to go home.

He's playing with other kids (SO cute, he will grin SO big and try to play games with them like tag!).

He's happy the whole time.

He takes redirection if he's doing something we can't do.

These are all HUGE improvements. Very, very proud and happy!

Cool kids.

Audrey has always hated jeans. Every time we pick jeans for her to wear, she throws huge fits, telling us that jeans are horrible and uncomfortable and she hates them.

This makes picking out clothes and outfits for her very difficult... so I was trying to figure out a way to encourage her to wear them in the upcoming school year. I decided peer pressure was the best way. When she brought up jeans yesterday, I decided to try my new tactic.

Audrey: Mom, do I have to wear jeans next year?
Me: You should, cool kids wear jeans.
Audrey: (thinks for a minute) But mom, I'm not a 'cool kid'. Why would you want to make me something I'm not?
Then later, I get the lecture: "Mom, my friends will like me for who I am. It's okay I'm not a cool kid."

This cracks me up. What 7 year old is set on NOT being a cool kid?

I did notice last year that she had a small circle of friends that she stuck with. These kids were all on her level academically and their interest in science and nature were aligned with hers... the 'smart' group. I just didn't realize that there was a 'cool' or 'nerdy' group in 1st grade... or that she would be dead-set on being in the smart group and NOT the 'cool kid' group.

At least we don't have to worry about her doing stupid stuff because her peers do. They can't even convince her to wear jeans :P

Shapes

Two days ago, JT was eating his oyster crackers. I handed him another, and I said, "Look JT, it's an octagon! Like a stop sign!"

JT grabbed the oyster cracker and set it down in front of me.

"Octagon have eight sides. Let's count. One, two, three, four, five, six..." (he looks at me, clearly showing me that was the last side), then saying, "Seven, eight" purposely recounting two sides.

I realized I was WRONG (haha), and corrected myself. "Oh, you're so right. It's a hexagon!

"Hexagon have six sides. One, two, three, four, five, six. It's a hexagon!"

I think he might have an easier time in Geometry than I did...

Mirror time!

JT practicing his angry face in the bathroom mirror.

Too funny!

Birthday Girl!

For her birthday Monday, Audrey went to work all day with The Hubs.

She came home with a crown and sash, super excited that she won the
green bear in the claw game at the mall :) Lucky birthday girl!

Happy 7th Birthday, Audrey!

7 years ago today, a beautiful baby girl was born.

I am so, so proud of that little (big) girl.

She has grown into an incredibly intelligent little girl. Never would I have imagined myself searching google twenty (or more) times a day for my 7 year old (flamingos are pink because of shrimp and algae, cats' tongues have fingernail-like keratin formed in hooks to give it that rough feel, for example). I love the way she thinks about things, the way her face lights up when something clicks, the neverending curiosity that she has.

Perhaps my favorite thing about Audrey is her kindness and compassion. I have never met a child that is as sweet, giving and understanding as Audrey is. She has always been called an "old soul", and it becomes more evident as time goes on that she is something very special. She wants to help everyone - and jumps at the chance to help anyone. Everyone is a friend... Her response when someone compliments her on her kindness is telling: "S/He's my friend. We always help our friends."

Audrey challenges me every day to be a better person, to try to be like HER. She is everything and more I could ever ask for in a daughter.

I love you, Audrey. Happy, happy birthday to my heart.

Nap buddies

Audrey's Birthday Video Montage

Cannot believe she's going to be 7 on Monday...

Brats and Compassion.

Today, an article was published on CNN. While I really don't want to post the link, because I hate giving it more attention, it is here.

And to be honest, it's not the first time recently I've heard people blaming a kid behaving poorly on parents.

Now, to be fair... is it sometimes poor parenting (or as the article above calls it, 'permissive parenting')?

Yes.

But let me present a different side.

Because we have been THAT family.

The time we were in Target, and the checkout transition that JT dreads started a screaming spree and I overheard a woman saying "I can't *believe* she lets her son act like THAT!" Or the time at Walmart the checker gave me the advice to 'spank him until he felt it' and 'put him in timeout all day until he gets it'. Countless other times I have seen 'the stare' that LZ Granderson talks about giving these parents in the article. Yes, I've been on that side.

And you know what? It SUCKS.

Not to be full of myself, but my husband and I are very good parents. Normal parents don't invest half the time we have in parenting, interventions and other classes. We have had countless professionals in our home, early intervention observations (AKA the government agencies) watching our every move. And you know what? Not ONE SINGLE PERSON has EVER questioned our parenting. In fact, we've gotten countless compliments on parenting our kids.

So an article saying that a child with behavioral issues is just a bad, poorly parented kid really, REALLY rubs me the wrong way.

My son is incredibly sweet. He is very polite and has great manners. He learned 'please' and 'thank you' before he learned the regular vocabulary and labeling of general objects that most kids learn.

For comparison on my parenting, I have a (one week away from) 7 year old who in an entire school year had ZERO minor behavioral issues. She is the only kid in her class who never moved her 'fish' for talking out of turn, being disrespectful or worse. I'm *obviously* doing something right.

But according to LZ and people like him (oh, and there are LOTS), my kids' behavior should be controlled by 'the look'.

Give me a freaking break. My kid is overwhelmed by (likely YOUR) perfume/cologne, by (likely YOUR) loud voice/noises, by bright lights, by unpredictable things... don't you DARE call him a bad kid.

Perhaps the most ridiculous part of LZ's article is the premise that airplanes and grocery stores are some sort of adult-only, priviledged thing. I can't avoid grocery shopping with my son sometimes, my husband works a minimum of 60 hours a week. We may have to fly someday - we've never visited our immediate family, it's a 20 hour drive. Now, as far as restaurants and such, my family absolutely tries to be respectful. When we go out to eat (rarely), we choose family restaurants, and plan on one of us walking outside with my son when he gets irritated. I want everyone to enjoy their meal, and will happily box up my food to not disturb other diners.

I've seen the argument 'he's not talking about special needs kids'. Well, hell yes he is. Autism has no distinguishable features. He can't tell if that kid is autistic or not by looking at him. (I've also seen the 'autism is a diagnosis handed out to anyone these days', which is not only incredibly offensive, but insanely ignorant... that is my next post, though... I refuse to address it here because it has no merit).

As angry as I am, all I can say to people like LZ is, autism rates are rising. It's at 1 in 91 the last time I checked, and rising quickly. It's coming to a family near you. You may feel high and mighty now, but it's coming. You WILL know someone close to you that is what you're calling a brat, and you will hang your head in shame when you realize that you're wrong. You might want to show some compassion now, because your 'my kid will never do that' line will bite you in the rear...

And if you're not sure if a kid is a brat or is autistic - and there's no way for you to be sure - go for kindness. Because that kid may not be a brat. They may have been dealt a really crappy hand in life and are doing the best they can. And those parents may be wonderful parents doing their best to navigate a disability. Living a day in their life is harder than you think.

Questions and answers

JT is now consistently answering ALL questions with a yes/no response (HOORAY)

He answers any where questions. He answers some what questions and most who questions. These questions he answers with full sentences, not just a one-word response like he was doing.

He's also responding to any requests... such as today, I said, "JT, go play!" His response was, "Okay, mommy! I go play!"

He's reading words I didn't know he could read. Colors, 'you' (admittedly, I wrote I love you on a piece of paper and when he read it, I had him read it several more times just to hear it ;) ). He's reading so many words I didn't know he could read, though, it's awesome!

He's starting to stick up for himself, which is a BIG thing I'm trying to work on. With his desire to please, and his newfound sensitivity (being more aware after starting his meds made him really 'feel' things because it slowed him down to realize what was going on), I can see him being the target of other kids getting him to do 'bad' things or picking on him. I want him to stand up for himself and not just play along to make them happy.

Seeing some awesome things around here... LOVE it!

Summer <3

We're having an awesome summer.

JT is making phenomenal progress - because his sister needs
attention constantly and demands it ;)

They are having the best time together just hanging out.

We're reading at least 30 minutes a day for a library program (Nick
Bruel is both their favorite author - JT loves Bad Kitty and Poor
Puppy, Audrey loves Happy Birthday Bad Kitty and Bad Kitty Gets a Bath)
we're practicing K (for JT) and 2nd grade (for Audrey) spelling.
They're both blowing me away with how smart they are. Doing science
experiments, cooking...

And donating a TON of stuff to the VVA. SO proud of Audrey letting go
of stuff to give to those who need it.

Knowledge building. Character building. Fun.

What more could I possibly ask for? (Maybe the energy to exercise
myself... Haha... Working on that one!)

Play time :)

We've been hitting playgrounds early in the mornings to play before we
fry...

Here's JT balancing at Weatherstone.

Monkey bars!

Poor Puppy by Nick Bruel

Poor Puppy read by Nick Bruel from mrsantunez on Vimeo.

This is JT's favorite book right now. This is "Poor Puppy" read by the author Nick Bruel.

It is SO cute!

Favorite Color...

Who knew?!?!

JT is having conversations with me (real, back and forth conversations), and I find out his favorite color isn't yellow (I figured because of Spongebob), or red (which I just guessed at).

It's blue!

At 5 years, 6 months, 4 days, JT told me his first 'favorite' - his favorite color.

Now to find everything in blue ;)

LOVE IT!

Last name!

JT brought me these this morning, saying, "Look, it's for JTmy
Duzan!"

Yay!!! Last name - check!

Now we're working on the address. Funny that when we say we live on
_____ Green, he responds by saying _____ Blue/purple/pink/yellow. :)

Pretty

So thankful...

My little man is doing awesome things. Just astounding things. Some of this is because of the meds helping him to calm down, and he's finally enjoying the world around him. Some of it is because he loves being out of school (weird, I know, he digs not having a structured school day) and he's learning so much from Audrey.

I've already posted about his huge gains lately on his blog, so I won't re-do the entire list here. What I will say is that this progress is making us, as a family, so happy.

We can do things now. We were trapped here by autism last summer. JT couldn't handle going anywhere. He would run off in stores, scream, hit - you get the picture. This summer he *asks* to go places. He wants to see people. He is SO good - staying with me, doing what I ask - it is unbelievable that we really don't stick out at the grocery store. In fact, the only way we DO stick out is he listens to me and does exactly what I say - and the typical kids are usually the wild ones! Kinda funny :)

We can play games - JT is a really big fan of Candyland now. He gets it, he loves playing it, and other than the annoyance of waiting his turn, he is enamored with playing games with all of us.

Our house isn't a complete wreck. Sounds funny, but this year he wants to play with US. He's not digging out every toy and tossing them around. He plays with a toy, then comes and gets us to play with him.

The best part is his mood. No meltdowns. None since starting the risperdal. He's so happy. The happy that comes with the adorable humming that signals bliss. He giggles all the time.

He tells us stuff. Feelings. Needs. Best part is just random stuff. I'm discovering he has an astounding memory - I'll ask (myself, out loud) where something is... he'll respond (he listens to EVERYTHING) with exactly where it is.

I cannot describe how many ways this has helped us all. Knowing he's happy. Knowing everything about him. Being able to relax - both at home and out. Being able to go out period without worrying about any behavioral issues or something else.

He is freaking hilarious. He has always been so funny and had the best sense of humor - but the more he talks the more hysterical it gets. We are almost always laughing at his practical jokes or funny something... He is so proud to make us laugh, too.

He's sweet. Snuggly, up close sweet. NEVER seen this at this level before. It makes my heart jump up in my throat when he climbs on me to snuggle or grabs his sister's hand just to hold it when we're out. Precious.

We still have stuff to work on. But it is SO much easier to be able to pick what you work on than to have a billion things on the 'crisis' list.

Mega Steps

In the past week and a half, we have seen some HUGE progress in JT.

-Sat through an entire meal, in his seat, sitting nicely at Chili's. In his seat. Even waited for me to get done before we went outside to wander around. In the past, he would have been on the floor, and we would have had to go outside several times to release some energy.

-Went shopping - several places - and behaved perfectly. No running off. No screaming. Walking around, staying with me, putting things back when asked with no tantrums or meltdowns...

-No meltdowns period since starting the risperidone. None. We have had a few 5-minute 'I'm mad' fits, but I would classify these as maybe a little more than a normal kid, in some cases completely normal.

-SO MUCH TALKING!!! He actually got in trouble last night because he would not stop talking during Audrey's tv show. It felt really weird for him to get in trouble for talking too much :)

-Answering 'yes/no' rather than giving a choice every time. I am still working on this... Instead of "Do you want Doritos or not want Doritos?" I ask "Do you want Doritos" and then if he hasn't answered in 30 seconds ask again with a "Yes or no" at the end. When I actually remember to follow through, and ask the question correctly, he responds appropriately. It's really cool.

-No more sippy cups. Just cups and cups with straws. Not even a sippy cup at bedtime!

-Peed in the potty at Target! First time he's peed somewhere besides our house or the two times at school. VERY AWESOME!!!

-Putting on clothes on his own. Yesterday he was playing a (more work for mommy) game where he got another shirt from his drawer and take the old one off and put the new one on. He did it on his own, just needing help with the tightest of the 3 that he did.

-Fun library visit. Stayed with us, elicited a few giggles when he jumped out from behind a shelf and said loudly "I FOUND YOU DADDY!!!" (it was super funny, The Hubs jumped a little).

-Taking medicine with no issues. He will tell us no medicine and yuck, but then takes it with no running away or screaming. Very cool. (Same thing with teeth brushing :) ).

-Sat through a game of Candyland. Figured out how to play. Is playing appropriately (although doesn't really enjoy waiting, we're working on that).

-Letting us watch other shows besides Spongebob. This is a biggie. Before he would FLIP OUT if we tried to watch anything else. Now he sits through with the promise that it's his turn next.

-To follow that, he's also understanding 'Five more minutes' or other concepts. Makes it much easier when he settles down knowing we're leaving soon, rather than him freaking out about leaving right now.


There's more, but those are the biggies. Way cool stuff going on here!

Bookworm

She loves the Bad Kitty books... Spent 2.5 uninterrupted hours reading
today.

Bad Kitty Takes a Bath
&
Happy Birthday Bad Kitty

"Tiny Life on Plants" by Karin Lindstrom

Audrey's reading report on her book.

I'm impressed!!!

Hopscotch JT-Style!

Beautiful

So. Cute.

Guess who

Can play Candyland?!

Family game nights here we come!

For JT...

I realize this song probably was written for something other than autism (or other disability), but WOW. When I saw this, I immediately thought of JT.

Everything I'd want to say to my baby in a song.



It's like a storm
That cuts a path
It breaks your will
It feels like that
You think you're lost
But you're not lost on your own,
You're not alone

I will stand by you,
I will help you through
When you've done all you can do
and you can't cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won't let go

It hurts my heart to see you cry
I know its dark this part of life
Oh it find us all and we're to small
to stop the rain
Oh but when it rains

I will stand by you,
I will help you through
When you've done all you can do
and you can't cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won't let you fall

Don't be afraid to fall
I'm right here to catch you
I won't let you down
It won't get you down
You're gonna make it
I know you can make it

Cause I will stand by you,
I will help you through
When you've done all you can do
and you can't cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won't let go

Oh I'm gonna hold you
and I won't let go
Won't let you go
No I won't

from CowboyLyrics

Rascal Flatts, "I Won't Let Go"

"My Terrific Brother"

This is the book Audrey wrote about JT. It is SO sweet, and shows how much they love each other.

New beginnings.

It all started on September 5, 2009, when we got JT's school assignment - Cary Elementary. I was so nervous about taking my 3 year old to another school, hoping that they would love him and I could trust them with my baby.

For the last almost 2 years, they have cared for, loved and helped my son more than I could have ever dreamed of that day.

His list of 'can't' dropped to almost nothing. He achieved things that no one would have ever guessed (and some flat-out told us he would never do). He has grown into a sweet, hilarious, very smart little boy. Big boy, he prefers to say.

He loves his teachers. So do we.

But as of 2pm today, JT is no longer in preschool. He is a kindergartener.

Letting go of something as wonderful as what we've had is so difficult...

Today, JT and our family have to say farewell to some of the most important people we've had in our lives. And we will miss them so much.

I can only hope that the next phase of our journey will be so full of blessings and wonderful people.

Congratulations on your graduation from preschool, JT! We are so proud of you and all you've done. Next up: Kindergarten!

For JT

Someone shared this video, and all I could think of was JT.

I will stand by you, buddy.

Reunited :)

JT's kitty disappeared for 5 days. We were sure she was gone for
good, but she showed up yesterday morning at the door!

After school JT picked her up and brought her to me. "look, mommy.
It's my best friend!"

Indeed it is :)