Careful.

Ever since the unimaginable tragedy in Newtown, Connecticut, I have been reeling. First, those babies. Oh my goodness. As a teacher (and future teacher in the public schools), I cannot imagine. I love my babies with everything, and I would protect them. Those brave teachers and sweet babies...

Second, the unconfirmed link and media speculation to the autism connection. Some media outlets went as far as to blame the tragedy on the killer's reported autism diagnosis.

Autism does not lead to violence. It's been proven again and again, autistic individuals are more likely to be the victims of violence than the perpetrators.

So I posted, "Autism is not a mental illness."

But here's the deal. While I did not intend to make the link (after all, our family is knee-deep in mental health diagnoses, JT has bipolar for example), it makes it sound like I'm linking all people with mental health issues to violence.

According to NIMH, 26.2 percent of Americans suffer with some sort of mental illness.

26.2 percent.

It is SO wrong to demonize in ANY way those with mental illness. 99.99 percent of them would never hurt anyone.

And as far as we know, the killer didn't have any diagnosis.

I know it wasn't the autism.

I don't know what it was. Why it happened.

But it's not fair to lay it on mental illness in general, when we have no idea what it was. It leaves the millions upon millions of Americans struggling with mental illness with blame they don't deserve.

We have to be careful. Just because it wasn't autism, doesn't mean we should divert the blame elsewhere just to divert it.

It was just evil. Plain and simple.

Special.

Last week, we had my little guy's IEP meeting. It was a re-determination meeting (our first 3 year re-evaluation, actually), so it was LONG. And draining. We went over so many tests, goals, accommodations, learning aids...

I learned a few things at this meeting.

First, I adore his team. The clearly love my son, and believe he will succeed academically and in life. They talk about his sense of humor, his intelligence, his strengths - non stop. They frame his weaknesses as 'not yet's' and 'we're making progress'. I left the meeting feeling like everything was good - and anyone who's ever been to an IEP meeting knows that isn't always the case.

Second, we have a long road ahead of us. I'm not talking academically, I'm actually talking about psychologically. The psychologist, when going over IQ results, told me he is 'acutely aware' of what he cannot do that his peers can do. He gets upset when he can't do something - calling himself 'dumb' or 'stupid'. On the flip side, he is immensely proud of himself when he does something right - he thrives on praise.

He's got a long way to go as far as speech and academics - really just reading, but it is so hard for him. I try to think about how that makes him feel. To know his peers can easily read a book, and to be unable to sound out a word. To hear his peers speak, and know that everyone else can keep up with the conversation but you can't. To understand (the speech therapist pointed this one out) that you are trying as hard as you can but you cannot produce the /f/ or /l/ sounds. Basically hear yourself say it wrong, despite telling your mouth to say it right. How hard it is to know you act different than everyone else, that everyone else is fine with those loud noises and sensory input.

Her point was proven a few days ago.

While visiting his classroom, I saw a picture of a little boy on a cubby that I had never seen before. I asked Graham if there was a new boy in his self-contained class he spends part of his day in.

"Yes, N is new. He's 'special'. He's 'special' enough to be in Ms. G's class."

He didn't say it in a positive way.

And in that moment, I felt my heart break.

Grad school...

Semester 1 is done (except 3 points in my intro class).

It has been challenging, stressful, and wonderful. I have loved my classes this semester, and I have learned so much.

I've had to get used to taking tests again, learned how to balance life and school and kids and work, learned how to study, how to take notes, how to keep up with a thousand due dates at a time and get everything in on time.

Crazy.

But I officially have a 4.0!

I cannot wait to start next semester. I know I will learn so much more.

So, until January 9... I can relax.

(If you know me... stop laughing. Relax a little.)

Momma + baby

My baby...

Dear JT,

Happy birthday!

Today you are 7 years old. It's hard to believe it's been 7 whole years since you came into this world.

You came into this world fighting. You had your little hand between the (double wrapped) cord and your neck... so lucky you made it. SO. LUCKY.

Since then, you have shown again and again that fighting spirit.

When someone has said 'can't' or 'won't', you have proven them wrong.

I love that about you. You are hard-headed just like your momma. It has always served me well, and it is definitely working for you. Never lose that fire.

You are the most amazing person. You never give up. Ever. You know what you want, and you go after it. Even if it makes you, and everyone else, crazy :).

You love with all you have. Your sister, mommy, daddy... You love us. And kiss. And hug. And tell us. I can't explain to you what hearing the words, "I love you, too" mean to me. Someday, when you have kids, maybe you will understand. I waited years to hear it. It is beautiful.

You are funny. You entertain. You love to see people smile, and perform to get them to. Your sense of humor is amazing. Everyone talks about you and your funny self. We all love it.

You are smart. SO smart. You don't always think you are, and that makes me sad. I hope soon you will realize how crazy smart you are. You amaze me daily. You will go SO far. Trust me. You may be only 7, but I see it in you. You're going places, kid :)

You love to hug, to run, to giggle. You love Beanie Baby Boo's (they are ugly, but you and your sister collect them... so we oblige). Your favorite movie (that we saw today, your first birthday 'party' with our neighbor!) is Wreck-It Ralph. You LOVED it. You are good at riding your balance bike. You could ride a regular bike if you wanted in a second. You just don't want to! You hate waiting. You prefer to stay home rather than go to school. You like to fall asleep in my bed, snuggling. You hug cats. You giggle hysterically at goofy shows and things like burping.

There is so much more I could say about you. You are amazing.

I cannot wait to see what the next year holds.

Love you... to the moon and back,
Mommy

Happy #7

to the cutest, sweetest, smartest, most awesome boy ever.

Today he told me, "Mommy, I'm your baby. I'm your 7 year old baby."

Forever and ever my baby :)

It was an awesome day filled with Wreck-It Ralph with his friend, lunch, cake and iPad-playing. Best birthday ever, as told by him!

Tonight I used the "A" Word.

JT and 'Cookie', his Beanie Boo (he loves Beanie Boo's - HUGE collection!)

We have never danced around the subject of autism around JT. We have used the word freely. But never with him.

Let me back up a few steps first, though. I have to explain why tonight would be the night I would choose to tell my son he has autism.

Today we had his 3 year re-determination for special education services.

It involved some results that while, not surprising, were difficult to hear. Severely delayed in language (really in expressive in particular). A lot of results that weren't surprising that were good to hear - like that his IQ is in the average to above average range (take THAT children's hospital team who said my son would never talk and was likely severely cognitively impaired! My team suggested sending you the results of JT's IQ test today... they made me giggle just a little in the midst of the 2+ hour process). Results that did surprise me - he no longer needs OT (I saw samples of work)... Academically he is average in every single area - what the hey?!

What was the hardest thing to hear hands-down was the negative self-talk he had during the process. The Speech therapist (ST) and psychologist reported him saying he was "dumb" and whispering "dumb, dumb" under his breath multiple times. This came usually when presented with a task he was unable to complete. The ST was unable to write anything on her evaluations, instead taking 'coded' notes on another sheet of paper, because JT was watching her to make sure he got it "right", and would get upset if he was wrong.

When it came time for the school psychologist to give her results, she told me she knew why JT was so hard on himself. She said his IQ (particularly his nonverbal) is so high that he is 'acutely aware of what he cannot do that his peers can do'.

I can't fully put into words what the meeting was like today. There was relief that my 5 year wait to hear whether or not he was cognitively impaired was over. Sadness about speech results, and the fact that he is so hard on himself. Happiness that he is doing so well and his team ADORES him, and knows him amazingly well. Heart-swelling love for the people in the room that were so quick to point out that JT has only been talking 3 years... and for a 3 year old, he's advanced! "Imagine what he'll be doing in 3 more years, 4 more years!" Distress that even they know that he needs 1:1 to learn best, and that they can't always provide it. Happiness that they DO provide it in the instances he needs it - reading, and mainstream math - his worst and best subjects.

Hearing administrators say that feeding therapy (behavioral) should be included in an IEP because 'eating affects everything' (our SD does NOT cover feeding therapy). That an AU student not getting a diploma is complete and utter B.S... THAT is heartening. That they agree, that they want to do more... they are doing everything they can. To hear his teacher say that someday JT will have a good job, make good money because 'he's SO smart and capable', that 'someday he will be completely mainstreamed, we just need to work to get him there' - THAT lifts my spirits.

I'm studying all this stuff in my classes (particularly diagnostics). I know what these numbers mean. That was the reason my breath caught in my throat when I saw his standard scores for speech. Why I smiled so big at his nonverbal IQ score. Why it was impossible to just listen to what they were saying and instead look at the standard score and know where he stands.

More than 2 SD's below average with speech just about kicked the wind right out of me. It seems so huge.

But JT has done huge before.

He had a 95% delay (or more) in every area at 26 months.

He's not even close to that now. He's closing the gap.

My only goal is to help him feel good about himself.

So tonight I told him he has autism.

"Wha's autism?"

I explained it makes it harder for him to talk, and to listen. That it makes sounds too loud.

I also explained that he is so smart. That his teachers tell me how awesome he is at math. That he is so sweet. And so good. And the best. boy. ever. That he is going to do whatever he wants to do because he is so smart and so many people are going to make sure he can do it.

But I felt kind of guilty. Why did I not have a reason why autism has HELPED him?

The hubs and I are both really good at math. That's not autism. I'm selectively social. Perhaps that's JT's social issues. We won't even touch OCD, I'm a big fan of order and neatness :) So is Audrey. Totally genetics. Science? Totally the hubs. I mean, our family is a bunch of nerds. Maybe he just has issues on top of that? But still, not a 'positive' for autism.

I want something good to say. I want to be able to say, THIS is what autism does for you.

But what I see is that it makes him feel like he's dumb, be in a separate classroom, hard for him to talk and cause motor planning impairments (an OT thing that we discussed today in detail). He has told me he feels like he has to perform routines (talking before he drinks or eats, repeating phrases, flapping, running, etc) and he tells me others don't do it - so he's unable to control it but he knows others don't do it (he's fine with it at home, kid runs laps like nobody's business around our living room). It means his diet is so limited I'm left to feed him infant vitamin drops to make up for nutritional deficiencies (hidden in the chocolatiest milk you will ever find so he can't taste it).

I LOVE him. LOVE. He is PERFECT. And mine. Autism or no.

Ideas? I want something positive to say. Maybe I'm not seeing something. If you've got something, please help. Seriously.

Thanksgiving - autism-style.

Today was a great day.

I woke up, ran over 7.5 miles (sa-weet!), and came back home to a sweet, snuggly (albeit sick) JT.

We started the turkey, prepped the broccoli cheese rice casserole and the mashed potatoes, and sat down to watch tv and be lazy.

At dinner, the hubs and I had a little of everything. Audrey was all about the turkey and potatoes.

JT had Doritos, glazed donuts and Cheetos.

Thanksgiving is all about enjoying great food and spending time with family. Whether it's turkey or donuts.

At the end of the day, we're all full, happy and we all had a relaxing, fun day.

Big. Fat. Win. 

Spelling!

JT's most difficult areas in school are reading and writing.

Imagine my surprise today when I opened his backpack and found a spelling test with a grade of 100%!

Hooray!!!

Running.

Since earlier this summer, I have been on a weight loss journey (my last one, I am not doing this to my body again). So far I have lost roughly 30 pounds, and while I have some left to be at my goal weight, I am now at a healthy weight and a good size. I'm happy, even if I'm not quite where I want to finish up at.

Part of that journey has included running. I've been running since 7th grade on and off... That's 21 years. Most of my life, I've been running.

I am finally to the point where I really enjoy it again. It takes time to get in shape (especially with those additional 30 pounds!).

It has always been a release for me, therapeutic, a way to get away from everything and take some 'me' time and think. To break away from responsibility and just be free for a short period of time.

This weekend I ran 6 miles. I barely felt it. I got lost in thought, my mind full of autism and JT and the future. My eardrums vibrating from the (too-loud) music beat.

And I realized, running is the only time I allow myself to feel weak. To feel like maybe I do carry a heavy load, and that sometimes it feels like it's crushing me bit by bit. The irony of doing the thing that makes me strong while feeling my weakest emotionally is definitely there.

Maybe that's why I love running.

I get my frustrations out, pounding my feet on the pavement. I allow myself to feel things I don't in my regular life.

When I get back home, I am myself again. I feel recharged, refreshed and able to take on anything.

Maybe it takes weakness to feel strength, and strength to feel weakness.

Whatever it is, I'm thankful for it. Thankful I am able to go out and wander. To be free for a while. 

At Hopeful Parents

Here's my latest.

Where to start...

ID, IQ and why grad school rocks.

This semester in my diagnostics class has been odd. The parallels between my life and the class have been amazing.

Of course, we are going through the 3 year re-evaluation process with JT, so there's a lot of 'diagnostics and assessment' going on. That's a big part of it.

Last week was huge, though.

Our discussion was on Intellectual Disabilities (ID) and IQ tests.

Part of JT's 3 year re-eval is the IQ test. When JT was diagnosed at 2 with autism, they also told me he would likely never speak and that he was likely 'severely mentally retarded' (their term, the correct term is 'cognitively impaired' now). They said I should get an IQ assessment done around the age of 7 (IQ tests aren't reliable before then) to confirm.

Since that day, I have been terrified.

I cannot explain why. He has autism. I know this. He has difficulty with many things. He has depression. He has OCD (part of the autism). He has anxiety (also a part of the autism).

But an ID? I just couldn't handle that.

Until last week and our class discussion.

We talked about a lot, but here are the things that I have highlighted in my notes:

IQ is what a child does, not what a child is. 
It is not fixed or unchanging. 
It is not a measure of potential. 

It dawned on me that it doesn't matter. IQ isn't reflective of what your child can accomplish. It doesn't mean you put restrictions on them or lower your expectations. It is just a snapshot of right now how they perform on this test versus their peers. It does not define them.

Halloween 2012

Here you have Batman and Batgirl!

We had a great time trick-or-treating. JT was great, chatting up the neighbors (sometimes forgetting candy after talking with the person passing it out). He was done after an hour, but we had walked all around our neighborhood and our neighbor and Audrey were tired, too. They got way too much candy and all had a great time.

In fact, JT is lying on the floor in his costume watching tv right now. He's a little upset today that Halloween is over. I'm glad he had fun at least!


I'm also participating in BlogHer's NaBloPoMo (basically you blog every day in November :) ) since I've been slacking at posting lately. Fun stuff!

Getting back to it.

After some desperate phone calls, we finally got in to see the psychiatrist.

He diagnosed JT with depression-NOS (likely bipolar) and anxiety.

He adjusted meds to help JT get back to the happy, flappy little man he is usually.

And it's working.

We are lucky.

Graham is giggly, goofy and happy.

And it's only been 4 days.

Relief is the biggest understatement ever.

He's doing better at school - they've noticed a big difference.

In a week or so (once we're sure he's stabilized) we start a new medication for his ADHD. It's tenex, which is not a stimulant (the good doctor and I are in full agreement that stimulants are a big NO from here on out).

I am not thrilled to be dealing with another go 'round with a new medication, but the reason we put him on it was for him to be successful at school. He can't be at his best running around crazy all day.

However, if this one is a dud, we're out of options. We've tried all the types of meds as of this one.

Fingers crossed and prayers said.

Where we are.

Lost.

It was more than ritalin.

Undoubtedly, the ritalin caused the suicidal thoughts.

But the rest is real.

Crying at school and at home. Super emotional. Having to drag him to gymnastics (even though he LOVES it). 

He picked back up on the 'you hate me' whenever we're upset with him. He still says he's stupid.

Tonight I told him, "Ms. *school psychologist* and Dr. *psychiatrist* and mommy are going to help you be happy again."

He replied, "I can't be happy."

Broke. My. Heart.

 

I want this back. This happy, goofy, carefree boy. 

My soul. 

Going anonymous.

So, I've decided to make this blog anonymous.

Don't be surprised when  you see my babies are now 'Audrey' and 'JT'.


Try not to use real names in comments, please :)

Choosing happiness.

Today I woke up and made a decision.

Happiness sometimes isn't circumstance, but choice.

I am choosing to see the positive from this week. And really, there is some good stuff that happened.

• JT has an awesome school team. They want to support him. They love him. Every single person from his teachers to the counselor and psychologist just want to help. 
• JT's doctor is great. He called after our incident, and apologized, even though it wasn't his fault. He also asked me, "What can I do for you, for JT?" He told me he fully supported us. Which is an awesome thing. 
• We found out JT is distracted/not participating in math in the resource room because he's bored out of his mind. His teacher moved him up to the 3rd grade math group late this week, and he's actually participating and enjoys it (despite the rough week). She told me how great he was at math and she picked up on it instantly, that he's above a 3rd grade level but needs to learn how to show his work at that level first before she can move him further up. 
• Audrey is crazy amazing. JT still says, "You HATE me!" whenever anyone gets upset with him. Without any discussion with her, she immediately turned around and said, "I do NOT hate you. I love you. But I am REALLY mad at you right now." What 8 year old would do that in the middle of a fight with her brother? My amazing Audrey. 
• We started a new rewards program at his school. It was an idea I had that his team got SO excited about. If it goes well, we may not have to consider medication anyway. That would rock. 
• Last, but certainly not least, we have some awesome friends and family. So many people have checked on us this week and offered help or a shoulder. I am so thankful. 

So we're going to do what we do... pick ourselves up and move on.

Next week will be better. 

So many questions...

This week has been a horrible week. "Crisis" is the word that comes to mind to define it.

My son said he hated himself. He said he wanted to kill himself. At 6 years old.

There was talk of taking him to the ER and him being treated inpatient by the doctor.

I found out ritalin can cause suicidal thoughts.

We took him off it.

He stopped the majority of the negative self-talk, the suicidal threats.

Medicine caused this for the most part. Medicine that I decided (with the help of a doctor) to 'try'. Looking back, it went downhill slowly. How did I not notice sooner?

Medicine we decided he needed because he needs constant redirection and is hyperactive. But HAPPY. And he passed the end of year tests, so he's not behind.

So he's progressing, he's learning, he's happy. But he's hard to keep on task, requiring extra work by the teachers.

So who am I medicating him for? My job is to make the best decisions for HIM. Not to make him 'easy'.

His self-esteem is not suffering because of his ADHD. He is not struggling academically. He just requires a lot more of teachers.

I see the flip side. I'm going into education. But we're talking brain-altering medication for my 6 year old.

I'm just not so sure anymore this is the path we need to be on. Maybe we need a break. But we need to make a decision in the best interest for our son, not for anyone else. That's our job.

Then I wonder about the self-depreciation. There is an underlying issue there somewhere that we need to address.

When I say I hate autism, I mean I hate the difficulties that it causes my son. I can't recall ever saying it around my son, but maybe he's overheard me. Does he think that I hate him because I say that?

Another re-evaluation and lesson: however angry I may be with the hand he was dealt, I will not speak negative of it. I can't do it anymore. I can't chance that it may be what hurts him.

I wonder if this is a bigger sign. There is a 'probable mood disorder' diagnosis involved.

It is heartbreaking for your child to say they want to kill themselves. That they hate themselves. You ask if they know you love them, they say yes. Which means I am powerless. My love is not enough. He has plenty of friends. That is not enough. We have family and friends (and friends who are like family) that adore him. That is not enough, either.

My son lives in a world where everything is mixed up, and a lot doesn't make sense. Things that are supposed to be easy are hard, so hard. This world is not always a friendly place for him.

I do my best to keep him happy. To help him love his life. To teach him how to navigate this world that doesn't fit, trying to interpret how he sees things and what he needs and getting it from every situation.

It's exhausting.

And now I feel like I'm failing.

The ONE job on this earth that I feel I cannot, must not fail at is being a good mother. That, to me, is the single thing that I cannot screw up no matter what.

So I am struggling with him, trying to find my footing and get back to helping him, stopping the hurt, making his life good.

Every first star I see, every yellow stoplight I go through, every lucky penny I find, every night when I pray (and day, several times)... my wish is the same. For my kids to have everything they dream of in life.

I can only hope that this is an answer to those in progress. A rough patch to lead to our dreams.

Truth.

I wrote this post yesterday, and scheduled it to post for this morning. 

Today is my birthday - I'm officially 32!

It's my best birthday ever. EVER.

I am on my way to doing what I am meant to do in life, and I am doing fantastic at it and loving (almost ;) ) every second of it. It is challenging material, it is challenging to fit into an already busy life, and it is challenging to manage my time to get it all right. But I'm doing it - and well!

My daughter loves school, and is learning stuff that is crazy for 3rd grade... and her latest progress report shows she has a 97% average. She was SO worried about this year, telling us maybe she didn't want to do TD... but she LOVES it. Her teacher is fabulous, and she is thriving.

JT (despite recent setbacks) is doing amazing overall. He is learning, he is succeeding socially, and has a great doctor and academic setup overall.

The Hubs's store is doing amazing. He is so great at his job, it's not surprising. But awesome that he is doing so well!

I love my husband.

For my birthday, I got a new car. So, technically it's in my name, and we had to get a new car, but the timing of getting the most awesome car ever was perfect. Then he also got me a Keurig. If you know how much I love coffee, you will appreciate how freaking awesome this is. I am the only one who drinks it, so I end up tossing a lot of coffee down the drain. No more! HOORAY!!!

I seriously cannot ask for any more for my birthday.

Amazing the difference a day can make.

My facebook post from yesterday afternoon sums it all up:

Worst day of my life. Got a call from the school today. JT told his teacher, "I hate myself." Before she could get past, "What?!" He added, "I want to kill myself." The school counselor talked to him and determined he was serious and knew what he was saying. He is 6 years old. 6. Years. Old.

His psychiatrist has us watching him for any additional talk of killing himself/dying tonight, which means trip to ER. He's calling tomorrow morning with further instructions. I have asked the school to involve the psychologist on staff (the counselor is already on it, she is obligated to respond to suicide threats).
 
So here's the deal. I now have a Kia Soul, a Keurig and a suicidal son. 

I'd give up every material possession I have ever had to make my son okay. EVERY. DAMN. THING. 

So truth? 

32 can only get better from here.  

Why is it...

that when things start getting better in one area, they start falling apart in other areas?

JT is going through a progress spurt/problem spurt.

We seem to have these concurrently every time.

HUGE progress = HUGE problems.

Right now JT is doing well socially. Really well. He is doing cool things like raising his hand at school. Playing with peers completely appropriately (when he feels like it, haha). His speech and communication is skyrocketing. So cool!

BUT...

We are seeing some really troublesome things. He is constantly calling himself stupid. Dumb. Bird brain. Ugly. Stinky. He's SUPER emotional. Cries in huge, choking sobs over seemingly tiny things. This happens both at home and at school.

His OCD is WAY out of control. He repeats things over and over. For instance, when you hand him a drink, before he will drink it he will repeat, "That my chocolate milk (or whatever drink it is)? Yep, that my chocolate milk. That my chocolate milk? Yep, that my chocolate milk.", sometimes at least 15-20 times. Or upon taking the car out of park, he will repeat, "Bucked my seat belt? Yep. Car is moving? Yep." several times. If he is agitated, he repeats it more, and louder. Sometimes he is screaming phrases like these.He does this both at school and home as well.

The teachers and I are keeping tabs on it, and JT's next doctor appointment is mid-November. Logging the behavior seems like the best thing to do, so we can figure out if there is any factors that cause it (we have found that he does sometimes use the negative self-talk when he doesn't want to do something, although that is not always the reason) and that disruptions and interrupted expectations seem to fire up the OCD more (again, sometimes this reason isn't it...). But it's a start, and a great tool for the psychiatrist to help us when we see him again.

We have had some big changes lately, so maybe that's part of it. We got in a wreck and the car was totaled... and JT was very attached to 'Blue Car'. Thanks to the ever-popular 'Cars' movies, he believed 'Blue Car' was hurting, and had feelings. No matter what I said he would not believe me. So eventually I lied and told him even though we couldn't fix the car, a nice mechanic took him home to fix him up perfect for his family.

We also bought another Kia, and told him 'Blue Car' is 'Dune Buggy' (the new car)'s friend.

Dune buggy

Don't judge. You do what you have to do.

He seems to like this, and reminds us of it.

My little guy is having a rough, rough time right now, and it ups the stress level in our whole family, too.

Hopefully we can figure it out and help him, because it breaks his momma's heart to see him hurting. 

Feeling blessed.

Some nights, when I'm feeling nostalgic, I find myself perusing old blog posts.

This blog is pretty old. It was created B.A. (before autism). Crazy, right? It's been here through the diagnosis, the 'tough years' (to put it incredibly lightly) and the awesome progress that we have been privileged to see.

A couple of things struck me tonight.

First, it's *amazing* what we forget. Things that seemed SO HUGE back then, the horrible stuff... I don't even remember it now. Without this blog to remind me, it's like it never even happened. This is stuff I thought I'd never make it through, and now it's nothing. That is crazy. Screaming spells. Knocking things off walls and flipping furniture. The Hubs and I were talking about how weird it is that we didn't remember it until I re-read it, or we didn't remember it at all. Supports the whole autism/PTSD theory!

Looking through those old posts, I realized how far JT has come. He is nothing short of phenomenal.

Never talk? Intellectual disability? WRONG. JT is slowly phasing out of his self-contained classroom with the goal being him in a mainstream classroom all day. His teacher has said she sees him not needing special education in a few years.

How nuts is that? Our kid was diagnosed as moderate/severe, and he is in a mainstream classroom or the resource room most of his day. He went to regular summer camp this year and did great. He is taking gymnastics at a gym that has zero experience with special needs kids, but the instructor says he'd love to have JT in his class because he did 'fantastic'.

We are blessed. Lucky. Beyond measure.

JT is a miracle in progress. All it takes is one night browsing old posts to remind me how far he has come, and how bright his future really is.

When things don't go as planned.

This past week, we signed Audrey up for taekwondo. We also agreed on a 2-week trial for JT.

Last week he did decent in class. There were some instances where he had to be redirected, but nothing huge.

Fast forward to today. Things did not even go semi-okay. He wasn't listening at all. Doing random stuff while the instructor attempted to teach.

Finally he started rolling on the floor.

I went and got him and walked him to the back of the room. It was a mortifying 'walk of shame' to the front of the room in front of all the parents sitting in the back watching their 3-5 year olds participate.

This time I didn't cry. I clenched my jaw and took a deep breath. When I got him to the back of the room, I calmly explained he would not be doing karate again, and we discussed what good listening skills.

I'm not stressing about it as much as I once would have. The moment is over. It's done. We won't have to do it again.

I'm just hoping gymnastics tomorrow goes better for Mr. JT. He is so excited about it, he has been begging to go. They have never dealt with special needs kids, though, so I'm a little worried about that. He will have to behave well in order for them to allow him to continue after his trial tomorrow.

So cross your fingers for us, pray, send us positive vibes... We can REALLY use them.

Week 1 of Back to School - SUCCESS

HOORAY!!!

Week 1 of the kids' school is done, and we are settling into our routine. We have martial arts 2 nights (for Audrey, JT is trying for 2 weeks to see if he'll do well in the class), Audrey has gymnastics 1 night, and I have class 2 nights.


In a news flash, grad school is really freaking hard. I LOVE it, and the material is awesome. But it is very difficult.

I start work in the pre-k class next week, and I am SUPER excited. We seriously have the cutest, sweetest kids ever in there. It will be a fun year!

Audrey loves gymnastics. She is really good at it. At her class last week, The Hubs sent me a text that said, "We should have never dropped gymnastics for her. She's good at this." She had a BLAST, too.
She ROCKS at martial arts. The guy doing their new student evaluations asked if she'd been trained somewhere else. She was really THAT good. I was super proud.

JT is a crazy hilarious kid. At their new student eval he preferred to take the craziest approach possible to hit a pad. However, the majority of the time he did listen and try to comply. I think he will do exponentially better in a group class when other kids are all performing the same things. I made the call to put JT in the 3-5 year old class (instead of the 6-8 year old). He acts more like the lower age group, and when I asked insisted he wanted to be in the little kid class. It will help him because he won't feel out of place (believe it or not) and

the instructors will be accustomed to his behavior in the lower age range classes, too. He's not out of control, just immature.

Hopefully it works out, if not, it wasn't mean to be... we'll just find something else JT would like to do. We did find something else Audrey LOVES in the process (you have never seen a kid hit a pad with so much enthusiasm as she did I promise you), and something that will help with her self-confidence for sure.

Sibling Love.

Updates :)

This fall, Audrey will be starting gymnastics and swim lessons (to get her proficient in Olympic strokes in preparation for swim team in Spring).

JT will be doing some sort of martial arts.

Add to it a crazy grad school schedule (did you know that 12+ hours of study is the norm per week for each course? That means I will be spending 24 hours a week on classwork!) and TD and 1st grade and we are going to be in for a wild (but fun!) ride.

I've completed my first week of classes, and I will definitely be challenged by my schoolwork. However, I am VERY excited to get started. The material is so interesting and fun to me.

In other news, we got the kids' teacher assignments today.

Audrey's class seems to be very TD (gifted) oriented, which will be awesome for her.
JT's teacher is new to the school. She has a double Bachelor's in elementary ed and special ed (awesome). She has a Master's in Literacy (double awesome, that's where he really struggles!).

It should be a wonderful school year for all of us!

New beginning... tomorrow!!!

Tomorrow is the beginning of my Graduate career.

I am SO excited to start on my MAT in Special Education. SO. EXCITED.

For 5+ years I've been saying I want to do this, but never had 'the right time'.

The right time is here, and the hard work begins!

Cross your fingers and send positive thoughts!

My amazing daughter, the environmentalist.

image found here

Audrey is Audrey.

I've never met anyone remotely like her.

She is strong willed, stubborn (okay, like me) and very determined to make this world a better place.

Thursday, walking into Target we saw a ton of paper trash along the sidewalk into the store.

As we're walking in, she starts picking it up.

I'll admit, my first reaction was, "Audrey, put that down. It's trash." I may have been slightly mortified she was holding trash.

She responded, "It's trash that doesn't belong here. I want to make the world a better place momma."

{I should mention here that trash is one of her big pet peeves... she is so concerned with the environment and animals.}

You can't argue with that.

As I approached the trash can at the entrance of Target, I had also picked up a ton of trash to toss in. Audrey had more. We couldn't get it all, but we grabbed what we could.

The bigger story is the people who were right behind us. They were fairly close; close enough to hear our discussion and Audrey's insistence on bettering the world (and to hear my nervous giggles about picking up trash).

As we walked in, I turned around and watched as they dropped handfuls of trash in the bins.

They smiled at us and nodded. They were doing the right thing because of my 8 year old.

She makes me a better person. She makes strangers better people.

She is amazing Audrey.

I am so blessed.

10 Things I've learned raising JT.

1. Try.
    You never know unless you try something. Think a movie would be a disaster? Yes, he has ADHD, but it might work!

2. Try again.
    Don't let a single failure hold you back from trying it again. Just because he couldn't do it yesterday doesn't mean he can't do it today. You never know when that miracle is going to happen, so keep trying. So the first movie wasn't an overwhelming success, but movie 3 was absolutely perfect, just because you took him to 2 more movies! He loves them now, and begs to go. You just never know!

3. Believe in the good.
   There are news stories, personal stories everywhere about how widespread bullying and mistreatment of kids with disabilities are. Within reason, though, you have to trust the people that care for your child, the kids that are around your child. In the few years JT has been in school, there have been more kind people by far than people who don't care (and I can't think of one that would want to 'hurt' him in any way). Human nature appears to be far more kind in JT's schools than the news makes it appear around the country.

4. Let him fail.
    There will come a time when you won't be there to catch him. Yes, it will break your heart if things go wrong (and here's a forewarning... at least in social interactions, it WILL go wrong the first few times at least). But he needs to learn. And fail. He will pick up on what he needs to move forward to make the next time more successful.

5. Listen closely.
    Even before JT was verbal, he was communicating all sorts of things with me. His body language, his eyes, his mood... if I 'listened' closely, I could tell something was wrong. When he gets upset now, his verbal language decreases and I have to read his body. It's amazing how well you can read someone when you're really paying attention, even if they're not saying a word.

6. Keep going.
    Some days it's just putting one foot in front of the other. Progress seems slow, or, at times, you feel like you're moving backwards. Trudge on, because it's the only way to keep going.

7. Have patience.
    Autism is trying on its' best days. Keep going, it will get better.

8. Find people you trust.
    A good teacher is important. A good doctor, too. These people are key in JT's treatment and progress. Don't discount their worth. And when you get good ones, don't let go.

9. Stay calm.
    The biggest lesson I've learned from JT? His mood matches mine. So if I'm stressed out an angry, JT is stressed out and angry. If I'm calm, he is perfectly amicable. It's all in how you present a situation. You can teach better ways of coping without him getting in 'trouble'.

10. Have fun!
      Above all, he is just a kid. He wants to play, have fun and just be goofy. Put that first. He will only be a kid once, and you'll never get it back. Enjoy it while it's here. It's hard to not want to try to play catch up 24/7, but it's not worth it. Have faith progress will happen, and let him enjoy himself like other kids do.

11. (Yes I realize that's over 10) Don't forget the melatonin.
      This is JT at 12:30am. Full moon, PLUS Z forgot to give him his melatonin. Don't forget the melatonin. Ever.

hopeful parents 8/10

JT doesn't perform on command.

Most kids, you can ask a question and get a serious answer.

Not JT.

You ask a question, you may get a serious answer... but if he knows you're really depending on it, he will either give you gibberish or (most often) the exact opposite.

This creates big problems, obviously.

He won't answer serious questions his doctor has. That teachers have. That therapists have.

Right now, his school team goes by what they know he knows (that sounds confusing)... he was promoted to first grade based on the end of year tests not on how he performed that day, but what teachers had heard him do consistently throughout the year.


But looking down the road, how is testing going to go? The grade level tests that require performance snapshots of a single day on a specific test?

What then?

What happens when 'we know he can' isn't relevant, and 'he didn't show us' is the response instead? Will he be underestimated?

Then there's the whole 'high school diploma' thing... he can't take 'modified' tests or he can't graduate with a diploma (instead getting a 'certificate of attendance').

'But he's capable' isn't a valid argument if he can't SHOW he's capable on demand.

Casts, food, and progress!

This has been a great week at the Duzan house!

Quick rundown:

• Audrey got her cast off! She is super excited.
• JT ate well this week. He had chicken nuggets (the freezer kind), which he hasn't eaten in a while. He had hot dogs. He even ate 3 bites of a grilled cheese - this is HUGE. He even said he likes grilled cheese today. He hasn't eaten a grilled cheese since we tried the GFCF diet and he responded by going from the worlds best eater to the dilemma that continues. HUGE. And today... a freaking cheeseburger. He was EXCITED TO EAT A CHEESEBURGER! Again he only ate 3 bites, but he liked it!
• I was able to negotiate those 3 bites without using a reinforcer or bribery (ahem... Positive reinforcement). He did it willingly!
• I was able to vacuum without a huge freak out, also by negotiation. I asked him beforehand this time, and he wanted the door shut to the room I was vacuuming. I am really happy about this one!
• JT is subtracting... In his head... Up to 20 correctly (and further up its just that he messes up his tens!). He just came in my room and was like, "10 take away 3 equals 7. 8 take away 2 equals 6." I thought maybe he had just memorized those 2 problems, but nope... He stops and thinks for about 3 seconds (so cute) and gives the answer. Way cool!
• JT is attempting to spell things. All summer he's been asking us 'How you spell _____?' Now he will start spelling it on his own. A HUGE start to the whole 'he needs to learn to read' thing!
• I'm not sure how to explain this, but JT is conversating better and better as the summer goes by. His speech (the /f/ in particular) is getting way better, too.

Just a little over 3 weeks until school starts. Craziness!

Life besides autism.

The Hubs and the kids creeking for gems at Emerald Hollow Mine today.

I hardly ever post about how everything is going in general around here, so here's our latest update.

• Audrey is worried about TD still, she's really getting nervous about starting school. She's made some friends this summer... although she's been pretty bummed she hasn't been able to play with them in the pool because of her cast. Luckily she's getting the cast removed a week from today! She's reading books constantly, from Dork Diaries to Diary of a Wimpy Kid to the Hollisters. She's had her first HUGE crush this summer (which The Hubs was not happy about ;) ) and then decided he wasn't worth it within a day (which The Hubs was REALLY happy about). She's such a sweet girl, and growing up way too fast. 
• The Hubs's store is doing really well... sort of the norm :) He has such awesome people that work at his store, that makes his job easier I know. He took this week off work, it's nice having family time hanging out around here. 
• JT's not sure whether he likes these 2 weeks' off camp or not. He LOVES sleeping in (he is definitely my child) but misses Susan and Jessica (his teachers). He's freaking hilarious, he keeps our entire family rolling. He is a real comedian, his personality is awesome. 
• I'm loving my job... hilarious preschoolers, awesome coworkers... what could be better?! Grad school starts in about 3 weeks, super nervous about that. Found an awesome workout buddy, we've been swimming/running/spinning starting to train for a triathlon next Spring and hopefully a 1/2 marathon sometime in the future. 

Basically... Life is good :)

Back to food...

The recurring issue in our autism-land.

Today we had JT's med check-up, and he has lost 2 pounds in 2 months.

Sigh.

That means he's down 1 pound for the year.

Double sigh.

The doctor is concerned not only about the weight loss, but about the lack of 'selection' in JT's diet.

We're doing everything we can.

Here's how getting JT to eat a new food goes:

• He hates it, and covers his mouth when we mention it or he sees it. 
• He can hear the suggestion of the food without the mouth covering.
• He can look at the food without freaking out. 
• He can touch the food. (This takes forever to get to)
• He can smell the food. (Again, takes forever from the previous step)
• He licks the food. (This one takes even longer)

So far he can lick a porkchop and take one bite from a peanut butter sandwich. In a year.

He has willingly taken a few bites from a cheeseburger in that time period as well.

His only meats are chicken nuggets (hit or miss), bacon (fairly consistent) and hot dogs (sometimes). He eats no fruits or veggies (unless you count a very specific type of apple juice). He is very picky about what he DOES eat - it has to look the same as it always has in order for him to eat it. Breading on chicken nuggets is a good example of this. If it's 'different', he covers his mouth (see above list) and can't even look at it.

The major issue (besides, of course, the fact that our 5/6 year old is losing weight over the course of an entire year) is that he is starting the stimulants this fall to control his ADHD at school. The doctor is uncomfortable giving stimulants if he can't gain weight. Increasing the dosage has been suggested (because in the 8 days we used it, there wasn't a significant difference) but we can't do that if he's losing weight.

Triple sigh.

Onward we trudge... through food hell.

Guilt.

I've posted before about JT getting promoted to 1st grade, and I've also posted about his reading issues.

He knows sight words really, really well. He memorizes like a champ. The issue lies in phonetics. He is completely unable to sound out words.

Before school got out, I bought How To Teach Your Child to Read in 100 Easy Lessons. I told his teacher I was going to work with him.

As the title clearly states, there are 100 lessons. We are on 4.

I feel really guilty.

I have excuses.

JT isn't really interested.
He's not on his ADHD medicine, so it's difficult to get him to focus.
He's spent from camp, where he's interacting with only typical peers 4 straight hours and just burned out when we get home.
I'm burned out from a class full of preschoolers who are awesome, but preschoolers (haha).

He has been asking "how you spell _________" about a billion different things. Two days ago he came up after we had turned on a Blue's Clues on the Wii via Netflix and said, "It not working. We try again later. Please fix it." Sure enough, the screen said "we are unable to load the title you requested at this time. Please try again later." I asked him if he read it. He said yes. There's no other way he would have said what he said.

I just feel really bad that I'm not pushing him harder. I want him to read, but I also want him to have a 'fun' summer like every other kid.

He's playing with a group of boys at camp - something he has never done before. He is interacting appropriately with them, and doing a great job of playing with them. He went from hanging on the teachers constantly to hanging with the kids all the time. HUGE STUFF. He's talking more, using completely appropriate sentences, interacting constantly, and making friends.

But not reading.

I'm going to try a little harder to do a few more lessons.

But he's having fun and enjoying his summer. And I want that more than I want to fight him to do work.

Come this fall I may regret this when I'm trying to do my grad school work, help Audrey with her TD stuff and try to teach him to read.

But for now, it's summer vacation. I just want him to love it.

Progress...

In going with the 'we're not even normal for autism' flow, summers are usually a time of significant progress in our house. 

Even though I didn't think we'd see it this summer, we're definitely following our trend. 

Here are a few things JT has started since the last day of school:

The future.

Recently, one of my favorite friends posted on her blog about how awesome having kids early is. While I agree wholeheartedly with her that it has made our marriage better, it made me think of the ways it didn't work out so great.

Back when we first got married, The Hubs and I decided to have kids early. Our plan was to have kids young - so we were active and 'fun' parents, and then when they were all grown up we would still be young and be able to travel and have fun.

Then came autism.

There's no way for us to know what JT's future holds in terms of independence and such.

Which means that our 'someday' plans may never happen.

These are the things that really suck about autism.

Audrey is 8!

Time flies when you're having fun...

Today my sweet little girl turns 8.

This little girl.

This one. 

Such a sweet baby.

Still got those blue eyes!

Yep, her. 

I cannot believe she is 8 years old today.

Happy birthday Audrey girl!

Hopeful Parents today!

Yep, it's the 10th of the month... which means I'm over at Hopeful Parents again!

My post is about Summer Camp - go check it out!

Poor Audrey.

Got a trip to the ER for the 4th of July.

This adds to our family tradition.

4 years ago JT broke his arm on the 4th.

When I was a child I broke my collarbone on the 4th.

Maybe we should stay inside next year...

First crush.

Besides our one (big) blip, summer camp is going well.

I posted before about a sweet little girl in the kids' class who 'like likes' JT. 

Well, yesterday, JT walked up to her, and said, "I'm gonna marry you." And she put her head on his shoulder. 

So sweet!

My big freaking mouth.

I knew I shouldn't have posted it. I knew it. 

My last blog post was all about how awesome JT was doing, how well everything was going, how 'normal' our lives were. 

It ALWAYS happens. ALWAYS.

As soon as you say 'things are good', the autism Gods chuckle to themselves. They make a plan, and BAM - throw you something that makes you realize that your life is not normal, it never will be, and you should probably take note for the next time you feel like it might be different. 

Today I saw my JT disappear into the autism abyss and become unreachable. I was reminded of his early years when he was in another world I could not touch, and it scared the ever loving you-know-what out of me. 

I can handle most things. 

But when I stare into my son's face and see blank eyes that don't even see me staring back, I break. 

And even when I get him back from where he's gone, I am too clingy, too afraid to lose him again. Not normal. 

I am so scared of losing him again. I remember what it's like having a child who is never with you, and I don't want to revisit those feelings. 

I don't want to lose him. 

Beautiful people.

You'd think by now our luck would have run out in terms of meeting wonderful people.

Worries.

JT's whole life I've spent worried.

He got here by the Audrey of God, by wriggling his little fingers under the cord wrapped not just once, but twice tightly around his neck.

He ate a penny that got lodged in his esophagus at 9 months.

He broke his arm at 18 months by falling out of a lawn chair.

Then autism came.

And the big worries.

Will he ever be okay? Have friends? A girlfriend? A girl that likes him? Go to school with typical kids? Do anything typical? Will he be happy?

In the past 6 months, several of those questions have been answered.

He is now mainstreamed for the vast majority of his day. In summer camp, of course, he's with typical peers all day. One worry that is slowly disintegrating, and one happy, happy mama.

He has real friends. Real friends at school, and now at camp. They like him for him. They are genuinely concerned with how he's doing. They are determined to make him part of their world. Another check off my list, and elation is an understatement.

This week, a little girl told Audrey that "I 'like-like' JT, and I think he's cute." While this slightly mortified Audrey, it made my heart soar a little more.

He is a happy kid. He loves people. He tells me his favorite color now is green. He names his little Lego people (the aerobics instructor, by the way, is now Jane). He kisses his camp teacher's hand every single day and follows her around to help.

My worries are slowly changing.

I still worry about whether or not he'll have a good day, whether he'll get upset. But I know he'll be okay.

Now they're turning into the same worries I had with Audrey.

Will he do well in First Grade? Will he make new friends easily? Will he be able to master the material?

There are only a few big worries left that keep me up at night.


For now, I'll thank God and the universe for all the amazing people here that walk with my baby and hold his hand. Because they have such an important role in our lives, and they step up every time. We have one extraordinary extended support system.

photo found here