Wednesday, May 30, 2012

Woven together.

It's amazing how much my day, my mood, my everything depends on JT.

A bad day can turn around with a single, seemingly tiny accomplishment. A good day can be smashed to bits by a 'needs work'. I can reach near euphoric levels when something spectacular happens. I can cry myself to sleep for weeks when we're going through a rough patch.

I try to separate myself. But it doesn't work.

For the past 4 years, I have worked with JT. In helping him, I had to really know him. Way more than you have to know a typical child, I had to really learn everything about him. I had to know what would set him off at any given moment. I had to be able to predict what situations would be tolerable, and which ones were too much for him. I had to know when I could push him to do more, and when pushing would cost us dearly in terms of progress and happiness.

Tuesday, May 29, 2012

Another piece!

Since the Strattera did nothing (or rather, did nothing to help - it did, in fact, have a pretty bad side effect), our doctor decided to try a different medication for JT's ADD (he's not the hyperactive subtype of ADHD, so I'll leave the H out :) ).

This time we are on the mildest stimulant there is.

Since The Hubs and I agreed we wanted to see the effects with our own eyes before sending him to school on it, we gave him a dose on Sunday.

We headed to the Discovery Place, where we played for 3 hours, including a 45 minute IMAX movie (Sea Rex).

JT did amazing. He was calm the entire time. He sat through the whole movie (this is a HUGE deal, he has never quietly sat through a movie - added bonus, he could recall all the movie info later, so he was really paying attention!). There was no squeaking out of anger, no fussiness, nothing. He was very compliant, following our directions and staying with our group the whole time. We saw the opposite of the possible side effect of aggressiveness (stimulants + autism can sometimes lead to that) - he was snuggly and happy.

We did note a huge spike in energy levels that evening - our boy was back to lapping the living room, orbiting our furniture. I know I'll have to do homework with him before dinner to get the most out of his focus.

I was so excited to get JT's school bag and read his notes today. His teacher was watching for changes, and I knew she would see some big ones.

I opened his folder to see this:
"He was awesome today."

The beauty of stimulants is he won't be taking them weekends, the summer or any day he doesn't have school. It's nice that it's out of his system before 12 hours is up.

So, it appears we have found another piece of the puzzle of JT :)

Image found here

Thursday, May 24, 2012

...or not.

So, I posted recently about JT repeating Kindergarten.

Then they did assessments, and found out that JT doesn't have any academic issues that would warrant retention.

Then we had the birthday party, where I saw JT interact with his peers.

We discussed some more.

And some more.

And now our team has changed the course of action.

JT is not being retained.

Tomorrow is the day to submit retentions, and his name will not be on the list. It's for sure.

We were all torn on the decision. He may have benefited from an additional year of K. But he has peers that accept him and enjoy him, and socially while he is awkward, he has no issues with making friends or finding playmates. His academics vary from on target to advanced.

With a principal so set against retention anyway, we didn't have a chance of a 'maybe' getting approved. We would have had to have a solid case, and it's just not there.

To be honest, I'm just exhausted from trying to figure out what we'd actually be doing. It's a relief just to know something for sure.

We've got a summer reading program set up here, and we're considering hiring a tutor for a few hours a week to work with JT on reading as well.

So, JT will indeed be a first grader next year, with his sweet friends and an awesome teacher that his AU teacher gets first pick at.

Fingers crossed it goes well!

Image from here

Tuesday, May 22, 2012

10 years!

Where has the time gone?!

10 years ago today, I married my best friend in my back yard with a Best Dog and Cat of Honor.

We've been through several moves, different cities and different states. We've got two big kids now, who are the light of our lives.

I love my The Hubs more than anything in the world, and am so happy I joined the rugby team all those years ago just to spend time with him. So glad he asked me to join.

I can't wait to see what the next decade brings.

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Monday, May 21, 2012

Birthday party

Saturday was the first classmate birthday party JT has been invited to.

It was at the little girl's house, they had a playground, trampoline and a bouncy castle set up in the backyard.

When we arrived, we got out of the car and were looking into the open backyard. All the kids were in the bouncy castle and immediately I heard screams of, "JT's here!!!" "It's JT!!!"

Then we were rushed by all the kids that were there, saying hi to JT and talking to him. The sweetest little girl ever (that JT LOVES) grabbed his hand and they all took him back to the bouncy castle where they played. My heart just about exploded right there.

JT completely blended in for the first hour and fifteen minutes. The only 'iffy' things he did involved running up to the parents/aunts of the birthday girl and saying, "Hey there!" and then not responding to their questions. Nothing crazy odd, and certainly nothing bad.

Then he wouldn't drink the punch or lemonade. He walked up and simply asked, "Can I have some water, please?" The aunts of the party girl were not happy. Rather than water, they offered him soda. I told them he just really liked water, and even offered to get it myself. They didn't want anyone else in the house, though, so one huffed in and brought it back, making it apparent she was unhappy he wouldn't just take a sugary drink instead. They even asked if I wouldn't allow the drink, and that's why he had to have water. I tried explaining he just likes water, but they were annoyed.

Next up was the cake. They wanted a pic of all the kids next to the birthday girl, and I mistakenly put JT next to the balloons. They were blowing and hitting him all over, and he was upset. I tried moving him, but at that point he was just done. He wouldn't stand up, despite some pleading on my part... and some yelling on the host's part ("JT! GET UP!"... yes, seriously). Finally he popped up with a smile so, so briefly, but one of them caught it. Thank you, Jesus.

He ate his cake fine, behaved really well. Had to get him some more water, strike 2 with the aunts. They weren't hiding their annoyance well at all at this point, despite my repeated apologies for my son wanting to drink water.

We stayed a little longer, JT played awesome with the kids. They adore him. They include him. He is their friend.

He ran up and said his, "Hey there!" to the aunts. I saw the look. The "What is wrong with that kid" look. My heart broke and I could feel a fire light up inside me at the same time. Not. Okay.

I heard the little girl's mom say she was going to open presents, so I approached her and told her we were leaving. I told her that I was terribly sorry she couldn't get a picture of JT, that he has autism and sometimes holding it together is really hard for him. That we had such a great time, and thank you for inviting us.

I saw it register across her face. When I said 'autism' it came together. None of these people had any idea. They sent out invites and didn't know JT was any different from any of the other kids. And he passed for normal, albeit quirky, until (and after) picture time.

Those ladies thought my kid was a brat. And then it made sense.

She was so sweet, thanked me for bringing him.

I saw her lean over to her sisters as we walked away. She told them.

"BYE, JT!!!" I heard them yell. Yep, they felt bad, too.

Even though the party was exhausting for me, JT had no idea. He had the best.time.ever. He played with every single kid there - bounced, slid and ate cake. He giggled and laughed. He helped his friends up when they fell. He proudly introduced me to all of them. He said goodbye when we left.

And I will call that a HUGE success.

Here's a picture of JT and the little girl he loves so and all their friends. Possibly one of the happiest moments of my life.

Saturday, May 19, 2012

Autism and health.

A week ago, we had JT's blood drawn. I'll take a moment here and brag a little on the little guy, who squeaked 'take it out!' a few times but required no restraint - just one tech holding his arm underneath to keep it extended and another drawing the blood. They took 5 vials of blood from my little guy, and he was an absolute champ.

(I will mention sheepishly that I thought it was going to be a horrific experience, and promised him if he did well he'd get to stay home from school... which he completely held me to. Upon completion, he hopped up, wiped two tiny tears from his face and declared, "C'mon mommy, we're going home!" with a big smile. Lesson learned: use small bribery first!). 

Risperdal can do some scary stuff. Thyroid issues, cholesterol issues, blood sugar issues... with how amazing this drug has been for JT, I was so terrified those tests were going to come back with one of the three, and we would lose the one thing that has changed our lives. I also know that little man doesn't eat the best diet, and was a little worried some of the numbers would be off there, too - specifically iron. 

Thursday JT's doctor got the results and brought them out for review. I held my breath, bracing myself... 

"Perfect." was the first word out of the doctor's mouth. They were absolutely perfect. As in, not one single number was off in all 5 of the blood tests. Not only were the ones they were looking for spot on, but there wasn't anything on those lists that was out of range. 

YAY for healthy!

Then I came home to see some links and reminders we are incredibly lucky. 

See, JT's autism is not related to his health. 

Many, many children's autism is tied in with their health. In the friends I've met, more often than not there are some pretty serious health problems that tag along with autism. 

Think mitochondrial disorder. Celiac. Immune problems. Encopresis. Major gastrointestinal and digestive problems. Megacolon. Those are just a few. 

The worst thing we deal with is eczema

And I feel guilty that we somehow dodged that bullet but others aren't so lucky. Women I know and love and their babies deal with so much more than 'just' autism every day. And even though more are sick than are healthy, many of the doctors they deal with insist they are unrelated. 

It it reiterates in my mind that there must be subtypes of autism. Not that it matters presentation wise in the end and with behavioral and academic solutions, but the 'why' - the cause, the reason -  must be different if our outcomes are so different. And that does matter - because if autism is a full body disorder in some kids, they need more than just behavioral and academic interventions - they need medical solutions, too. 

Hoping for some new breakthrough in research for those moms and their kiddos (and doctors that listen as well as ours does) - autism alone is hard enough. 

Photo from here.

Wednesday, May 16, 2012

"Autism" by Audrey

by Audrey 

Didicated to my brother 
with autism
JT Duzan


a poem

Hi my name is 
Audrey my brother
has autisim and these
are things about
autism. it makes things
harder it makes things
difrent and it make
thing not right!

THe End
that was
my poem

That's the best description of autism I've ever heard. 

Love that Audrey. 

Sunday, May 13, 2012

IEP's and such.

from here

This week we had JT's IEP meeting. It went just as well as I thought it would as far as our plan and his services - his team has put together the best goals he could possibly have, and I believe he will have a stellar year next year with them. I really cannot say enough good things about the awesome people that work with JT every day at school. I'll just say I believe the big man put us here in Huntersville for a reason.

There was a disagreement between myself and the principal. Being the principal, she doesn't want to retain kids regardless because it looks bad on her reports. I want what's best for my child, not what's best for her ego. She's never spent a minute with JT, yet she wants to dictate whether or not he should be retained, even though his whole team agrees he should be. It made me a little upset that someone who only knows my son in passing can veto an entire team who knows and loves my son. The worst part is it appears she does indeed have the last say in this matter. Luckily, JT's teacher spoke with her after our meeting and she does appear to be coming around. I'll cross my fingers, but for now we have no idea whether JT will be in K or 1st next year. It's one of the very few negative IEP experiences I've had, and was probably the worst overall. I was not happy.

For anyone who isn't aware, the IEP is a legally binding document that lays out a plan for a student with a disability in regard to accommodations and services they will receive. We have these meetings once a year, or however often we need to rewrite goals or adjust his services or accommodations. Our meetings are usually around an hour, which is blissfully short compared to many others' experiences.

I realize that JT has an IEP because he has a disability, which means he has deficits. These deficits require accommodations to level the playing field, so that he can perform to his potential. 

But speckled throughout the 3-page document are phrases like these, that support the need for specific goals:

  • JT is not always able to blend sounds and identify beginning and ending sounds in words. 
  • JT also is not able to determine the number of syllables in a word, nor can he identify rhyming words.
  • JT cannot always answer reading comprehension questions based on a story read to him, nor can he answer reading comprehension questions based on a short story he read. 
  • JT also cannot use pictures to complete a graphic organizer to summarize a story read (ie who, what, where, when, why).
  • JT cannot always compare and order numbers and number sets, nor can he use ordinal numbers (first-tenth). 
  • JT cannot compare geometric shapes or use directional and positional vocabulary. Also, JT cannot use data to create simple graphs and answer questions. 
  • JT is not able to create a sentence when given a picture to describe. 
  • JT also is not able to apply correct grammar and language conventions. 
  • He does not capitalize the beginning words in a sentence, nor does he provide ending punctuation marks. 
  • He follows classroom directions well, but has difficulty when directions are more complex or contain temporal/spatial concepts. 
  • He needs visual cues to answer other simple wh-questions. 
  • JT continues to need some prompting to request consistently. 
  • He has good vocabulary but has difficulty sorting items into categories. 
  • He cannot produce /f/ or /l/ sounds, which are typically developed by JT's age. 
  • He does not remain on the writing line. 
  • He cannot appropriately turn the paper and use small snips when cutting out circles. 

It's so hard to read how much your child cannot do. Even when an IEP meeting goes well, it is draining, and this is why. I never had to hear about all the things Audrey could not do, or how she compared on a percentile or age based difference to her peers. It sucker punches you and takes away your breath to read the *can't's*. Trying to keep a level head and smile through a meeting when you're reading off your child's shortcomings is torture.

Onto the positives (because it's always a rollercoaster of emotions)... the teacher believes JT will be entirely mainstreamed with no need for supports within the next year or two. He has entirely appropriate peer relationships. Other kids are really his friends, and their friendships are as equals. That was the most positive part for me, honestly. I worry so much about him having friends, it feels awesome to know that he really does have friends. His social interactions, expressions, greetings and such are age and grade appropriate. He contributes to the classroom regularly. He is capable of doing all the work. All that is amazingly wonderful stuff. The speech therapist is leaving (BOO) and told us how much she would miss our ornery little man. He messes with EVERYONE, he has a crazy wicked sense of humor. He gets them all laughing pretty hard.

In short, next year JT will be in the autism classroom only at the beginning of school. He will be in the resource room for math, reading and writing, and in the regular classroom for everything else. He will be getting extra reading instruction from the resource teacher as well. He doesn't need an aide, as evidenced by his success this year without one.

For now, it's over. Until next school year at least. I'll file this paper along with all the other IEP's he's had for reference. Then I'll hang out with the cutest, sweetest, smartest, funniest little man in the world - the one that you can't see perfectly on the 24 pages of that document, but that obviously his team knows and appreciates and loves.

Saturday, May 12, 2012

My big news!

I read stories in the news of teachers mistreating special needs kids.

I hear stories of teachers giving up on special needs kids, saying they're not capable because of their disability.

And my heart breaks every time I hear, see, or read anything about our educational system failing a child with a disability. I see JT, his classmates, his friends... and I know that while they have a good team, there are so many who do not. We are lucky.

But it shouldn't be about luck. Every child deserves an awesome teacher who is invested in their success and pushes them to achieve.

About a year ago, after reading a particularly depressing article, I told my husband I was applying to grad school. I didn't know when or where, but I knew that I wanted to go back to school to be a Special Education teacher. Working with my son has been the most rewarding experience I could ever have imagined, and I would love to make a career doing what I love.

In February, I took a leap of faith and applied to Graduate School. For almost three months I have checked my email for the notification that a decision has been made on my application. On May 1, I got it. I held my breath as I opened the link, and was so excited to see the welcome letter.

This fall, I am headed to UNCC to get my Masters in Special Education.

Many of us special needs parents (moms especially) leave careers to care for our children. For many of us, we find a passion. Whether it's teaching, advocating, caring for special needs individuals in general... we find a new sense of purpose.

I want to be part of the reason the world changes for our kids.

I finally feel like I'm on the way to doing what I'm supposed to be doing. Without autism, without my sweet baby boy have been diagnosed, I would never have found what I really want to do with my life.

Thursday, May 10, 2012

I'm back at Hopeful Parents!

Go check it out!

It's all about my incessant planning (that drives poor The Hubs crazy :) ).

Saturday, May 5, 2012

Kindergarten... Again.

(image found here)
A few weeks ago I got word that JT's teachers (both) were recommending retention next year (aka repeating Kindergarten).

At first I was really upset. I mean, his report cards are actually good. He's rocking math, science and social studies - he received 'performing at K level consistently' on all 3 of those subjects. His behavior is in line, too. The only hold up is reading and writing...

And then they want him fully mainstreamed. The hope is that with a year of extra time he will be likely mainstreamed fully by first grade. They want to increase his mainstream time throughout this year to support that.

If you go online, there are so many studies about how retention is so bad for kids, and tons of parents weighing in on why other parents shouldn't consider it. There are specific articles addressing special needs and retention and how bad of an idea it is.

But then I started digging around a little deeper. On forums I found posts by parents who had decided to retain their autistic children for the same reasons we were facing. Not one single parent regretted the decision. They all talked about how much it helped their child. I found tons of parents who did regret NOT holding their child back.

So I thought about it. Reading and writing are huge. In first grade, even math problems become word problems. If he didn't have that foundation, everything would slide downhill. He needs a strong foundation before we move forward in order to be successful. What good would it do to move him forward and have him already behind? We would be constantly playing a game of catch up, unable to focus on current academics because we're trying to address the last thing they did.

So, he will repeat Kindergarten with the same teachers as this year. Teachers he knows and loves, and that know and love him.

I've already seen the draft IEP, and they have every goal (seriously, and then some) that I could possibly have asked for besides one small thing: social skills. And they are willing to add it as soon as I give it to them. Reading and writing are HUGE in there. I am so pleased with the document - I am in shock at how great his goals are, and how well his team obviously knows him. So awesome.

So again we'll be banking on a class of kind students to help him out. We'll hope the teachers can challenge him and give him new material when necessary so he doesn't get bored. And cross our fingers that increasing mainstreaming goes well!