Friday, April 13, 2012

Autism Awareness 2012- My Son's Aspergers Diagnosis

This is Autism Awareness month and so I  wanted to talk some about Chaz and what it's been like the last 6 years since I found out he has Aspergers.
Chaz 11 years old

Sometimes I don't mind talking about it but other times (like now) I have a hard time with it.  It's not because I'm ashamed or because I am in denial.  Sometimes I get sad because I want the best for him in life and it kills me that I can't just fix everything for him.

My baby Chaz

Autism (or Aspergers) can come with bullying and he's had his fair share.  There is a reason I homeschool Chaz and it's not just because of other kids.  I have major trust issues even with teachers.  He's had a couple of good ones and a couple of really bad ones.  He's been mistreated by his teachers and been put to shame in from of other children.  Do you think it's normal to have a young child depressed and suicidal?  No, it's not normal.  I didn't know he had a teacher that was putting him out in the hallway of his school every day with his own desk.  He was told he can listen but can't be in the classroom with everyone else.  He was called the school freak because not even the teacher wanted him in the room.  Was I told about this by anyone?  Did anyone ask my permission before doing that?  Nope.  I was told everything was going fantastic by his teacher and other staff members.  He's been beat up, choked, mocked, etc.  I can't talk about it or write about it without crying.  The boy I carried for 9 months, nursed for 5, cared for, and loved, was having to leave his safe home every day and face a harsh world.  I didn't know he was mentally beaten down till he started writing about wanting to kill himself.  That was it for me.  My boy was coming home and staying with me.  He's not a freak.  He may be different but he's God's perfect creation and he was gifted to me.

Chaz (left) playing with his brother 12 months younger

You want to know how I found out he had Aspergers Syndrome?  Well, he was a pretty tough toddler and would never look me in the eye before he was five.  I figured he was just a really tough kid.  After all, I had 3 boys within 3 years and had my hands full.  Chaz was majorly delayed in potty training and I was beginning to worry he was going to go to Kindergarten in diapers.  He did have some speech issues but like I said, he was my first kid.  I didn't really know what was normal behaviors.  I have to admit I was relieved when Chaz got to school age.  Taking care of him was really, really tough and I looked forward to that break in the day.  I took Chaz to his first day and crowded in with other parents at the school.  Everyone was excited that their baby was growing up.  I looked around the white room and the tables and chairs that were set up.  Was Chaz really gonna sit in those chairs like a big kid?  Really?  I had an unsettling feeling in my gut when I left him there.  As I was leaving I looked back and saw his eyes wide looking at me.  I figured it was just mommy nerves and left to celebrate our kids' first day with other friends.  Soon after I get a phone call that I needed to come get my son because he had bit his teacher on the first day.  Crud.  I picked him up and brought him home hoping the next day would be a better day.  The next day I drop him off but get a phone call half way through the day again.  I needed to take Chaz to the hospital.  Chaz kicked his teacher, ran from her and then ran straight into a metal door splitting his head open.  Really?  He must've been freaking out.  I called Charles and he came with me to the school to pick him up.  Was Chaz freaking out and crying?  Nope. When I went to pick him up from school he was just smiling and happy to see us. He was calmly talking to us as if there were no hole right in the front of his forehead.  It was so deep we could see his skull and he wasn't even complaining.  The school called and said that there are only 3 strikes allowed and Chaz already had his second.  Being that Chaz has only been to school 2 days, that didn't leave a lot of room.  I pulled him out that day and enrolled him in another school.

You can see the scar where Chaz was stitched up

The next school wasn't nearly as strict and the room looked a lot more friendly.  I had a better feeling about this one and he had the sweetest teacher.  After a few days she started calling and telling me about some troubles she was having.  I really didn't know what to do as I figured it was just some behavior issues.  Rolling on the floor under the desks?  Licking the floor?  Hmmm.... Odd, but I had no idea what to think about it.  While the other kids were working, my son was in his own little world.  I was starting to get desperate as I got report after report of my son's behavior in the classroom.  I was feeling like a pretty crappy parent I guess I should say.  My shoulder started to droop each day as I went to pick him up.  On a particular day I was feeling really defeated when the school counselor walked up to me and asked if he could talk to me.  He had done some research that week for my son and printed out what he thought Chaz might be dealing with.  The title of the paper said Aspergers Syndrome.  I could tell he was a little hesitant suggesting this to me not knowing how I would take it.  He read some of the list to me and it was like he was reading about Chaz.  My heart lifted as I realized that maybe all this time Chaz was dealing with something bigger.  This meant I could get some help.  Mr. Chavez looked relieved that I wasn't offended but I'm sure he couldn't miss the sadness in my eyes.  I was happy there might be some answers but sad that there might be an answer to all this.  My son?  With the reports from the teacher and the school counselor, notes from mommy, observing Chaz, he was quickly diagnosed with Aspergers Syndrome.  The doctor said there as no doubt whatsover that he had this and sent me home with my mind whirling even more.  Where do I go from here?

Chaz 8 years old

I've made mistakes along the way with trying to stumble along different paths.  Do I put him in a self contained classroom?  NO.  I discovered that he copies behavior and since the rest of the class was pretty wild, cussed, and threw tables and chairs, Chaz would also do these things.  After a year of that mess I found a different school and wonder of all wonders I found an angel of a teacher.  She just happened to have trained to work with Aspergers kids in New York for 3 years.  NO WAY!  She taught regular first grade and said it was no problem whatsoever to teach Chaz in her classroom.  She taught me everything she could about Aspergers and how to help Chaz.  She was an angel teacher and I wish I could go back and give her a big hug for everything she did.  She took one of the times of my life and made it feel like it was gonna be okay. She gave me the confidence I needed as a parent to help him.  Chaz no longer was rolling on the floor but doing very well.  He was given a seat in the front-left.  He was still sitting with the kids but much closer to the teacher's desk.  He was given a visual schedule and 5 minutes warnings before each task was to be done.  He was given an assistant to sit with him during math and language arts hour to help him focus.  Chaz was given more breaks and was even allowed his own snack time.  Since his legs were more sensitive than usual the teacher bought a cushion for his chair he had to sit in every day.  This lady UNDERSTOOD Chaz.  I will always be so grateful to her.  Unfortunately when kids advance in grades they change teachers.  It pretty much went downhill from there trying to find teachers who could work with Chaz.  I think most of the problem is just ignorance.  If teachers don't understand Aspergers then they aren't going to know what works for them.  I communicated as best I could but often was just treated like my son was naughty and he just needed to be punished.

Chaz and I 2009

I didn't have the best support.  Some said I would ruin his life by pinning Aspergers on him.  Some felt I just needed to spank him.  One lady at church even went as far as to say my son was demon possessed.  Yeah, that one hurt.  Charles and I felt very alone in our journey and really didn't even know whether or not we were gonna medicate Chaz.  After trying for a week of medicating Chaz and seeing him actually get worse, we never medicated since.  So far our stance is that we will only medicate if he becomes a danger to himself or anyone in our family.  Over the last 6 years I've gotten advice from so many people who tell me what I need to do.  Not one of them ever had to deal with someone who had Aspergers but I know they were just trying to help.

Chaz's best friend Dexter also has Aspergers

Yesterday I was at a Behavior Health center and was able to talk to someone about Chaz.  I told the man that I needed a new doctor for Chaz but was very hesitant.  He asked what my fears were but I drew a blank.  As I sat there in silence for a minute, I realized why.  So many people I trusted had actually hurt my son more.  Even though there were a couple of good teachers and a good doctor in the mix, he's dealt with a lot of bad.  I've been holding my son in a protective embrace and have a hard time opening up to trust someone with my son.  I know this doctor can help Chaz, but what if he does what another doctor did?  His original doctor that helped us get so far was one day just gone.  I wasn't given a warning at all.  He was assigned a new doctor who was very cold and didn't care to talk to me at all. He talked to us for 10 minutes and try to change Chaz's diagnosis all together.  He knew nothing about Chaz but wanted to just get us out of there.  I left and never went back.  I know it's time to find a new doctor that can work with us but I'm gonna have to open up and talk about everything again.  This will be good for us since as Chaz gets older we deal with new issues.  I hate that he can't make friends and that kids give him funny looks when he tries to talk and relate with him.  I'm happy he made friends with another boys that has Aspergers.  I wonder how he will be as a teen or ask an adult?  All those things I worry about but I try not to.  I just have to take one day at a time.

Our family at the Science Center 2011 (Chaz top left)
One thing for sure is that I love Chaz with all my heart.  He's my firstborn and my son.  Chaz has taught me more about unconditional love, PATIENCE, forgiveness, and tolerance like no other.  I can't imagine missing out on a kid like him. :)  It's not hard every day but we sure have our moments.  Challenges change as he gets older but he never has to doubt whether or not his parents love him, support him, and he knows he has the biggest cheerleaders in this family. Learning Activities-First Month Free-Click Here!


Unknown said...

I will always love your blogging. Thanks for letting us know we aren't alone in this world but so many times feel that way!

Karen said...

Reading your blog confirmed my decision not to send my son (SPD, ADHD, ODD) to preschool. The psychologist who diagnosed him said he should go so that if he has a failed school experience it's before he's in elementary school. Really. We decided to keep him here and keep working with the OT and let him mature a bit more and continue to bond with me. We're also holding him back a year before we start school. And we'll send him to a small Christian school. If that doesn't work (I've heard school and ADHD can be a difficult mix), then I guess I'll try homeschooling of some sort...we'll see as time goes on...

I figured he has enough behavioral issues that we don't want to share them with other preschoolers and we don't want to add any extra ones!

I have been going to a MOPS group twice a month which gives him a small dose of exposure to other kids...not sure if I'm going back next year...most mom's are a lot younger then me and have fewer kids...and I'm tired of the fundraising all the time to pay for the childcare....we'll see. He does really like it so I may change my mind...

Sorry this got so long...thanks for sharing!

Motherhen said...

Thanks for this post. I can relate to what you are going through in so many ways. My son and I have had some very similar experiences, and it was the bad teachers who were more cruel than the students. We have been blessed with some great teachers through the years, but there have been times when I have seriously considered homeschooling him. He is such an amazing boy in so many ways, he has wonderful gifts to offer, but sadly I know that his journey through this world is more difficult because of his differences. I often weep not from shame, but because I am acutely aware of his vulnerability. Being the parent of a child with special needs awakens something within us. We realize that we need to advocate. We can never look at the world the same way again. We aren't jaded, but I think we are more sensitive. And I think that this makes us better parents in general. We learn skills that we can use for all of our children and all people we encounter. As sad as my son's difficulties make me, I am glad that I see the world with these eyes now and wish everybody could. (((HUGS)))

Anonymous said...

You are so wonderful! I can't imagine it, I was made fun of alot just for the simple fact my parents couldn't afford high end shoes or clothes. I decided that a uniform school would stop all the bullying (w/maddie), but I'm slowly seeing that it doesn't matter if they are all wearing the same thing or not they still find something to make fun of, she came home crying because her gma bought her shoes from a garage sale and thoses brats stated "your shoes aren't new, there old!" They are 5 years old. What is wrong with some of these parents. One went as far as throwing a book at her face, when the teacher confronted the parent she said "I'm sorry, but I dont know what to do. we are having problems with her at home as well." Shes 5, your the parent stand up!! my daughter knows not to mess with me, I wil not allow my daughter to be bullied or be the bully. He is so special I can't believe kids/adults can be so disgusting. Keep up the good work, you are such an inspiration! <3 Jessica Birkenhauer

Unknown said...

LOVED the post. It was just like reding my own sons story! I had tears running down my cheeks thinking back to those HORRIBLE days! Thank you for sharing! What WONDERFUL parents Chaz has and how lucky is he to be in your AMAZING family!!!

Jessi said...

That is horrible how he was treated! And someone saying he's demon possessed?!?!? What? I had never really heard about Aspergers until I seen a movie where a boy had it. It's a good movie, maybe you would like to see it. It's called A Mile In His Shoes. It's even a true story.
Never ever trust public schools! Now they have video of teachers strapping down and tasering autism kids for not following simple commands like talking off their coat. Do you think they tell the parents they do this? Nope. It is so sad. Glad he is home schooled now and out of that!

Jessi said...

Trailer for A mile in his shoes

Unknown said...

Thanks for sharing. I am trying to pin point my 7 year old's behavior problems right now. Homeschooling has helped some but it is still very challenging.

Zion said...

You are doing a great job with him and with all of your children. I know that as you trust the Lord's leading and the intuition He gave you then you will know what path to take from here. It is heartbreaking to hear his story, but I just know that the end result will be beautiful. My daughter is going through a situation right now where they are looking into the possibility of her have a hearing problem, because something isn't right. It's so hard to know what to do, but at least we all can all encourage one another as we are on this wild mothering adventure!

Virginia Revoir said...

Thank you everyone for your nice comments. They meant so much to me. Hugs.

Kerrie McLoughlin said...

You are killing me here. I sat and just cried. Thanks for sharing! I believe my son has mild Asperger's and a therapist who treated him for his short-lived OCD said he could go for testing but we have chosen not to because all is well (since we homeschool, I believe, so we can foster him and protect him and we know him best). Put a label on or not, the kid is who he is. I've had family members who think we are bad for not getting him diagnosed, but those are members who barely know us, so I have to take that into consideration. You are amazing, and so is your family. I truly enjoy your posts!