Tuesday, January 22, 2013

Learning through change

Sometimes I just don't understand.  I honestly thought things were going ok with our kids.  I don't talk a lot about what happens in our house, because quite frankly I am drowning in some ways.  I thought having a child with Autism was going to be the only thing life would throw at me.  Yeah...wrong.  Apparently mysterious forces were at work.  Hey, if she can handle one kid with Autism, she can handle two...oh and here's another child with ADHD and ODD.  Right...ok then.

Now before you think I'm asking for sympathy, I am not.  I am tired.  I am running around like I have my head cut off.  It's exhausting.  But, it's also an amazing learning experience.  I have three kids, with different needs.  And some I've never even heard of nor dealt with.  The heck is O.D.D? That's been the one I've struggled with the most.  I have been surrounded with Autism for years, but never heard of nor had to deal with O.D.D.  It's been a learning experience.

My youngest son was recently diagnosed with P.D.D and O.D.D.  That really shocked me.  Some of my closer friends would ask me if he would always do certain behaviors.  I was just in...well he's just being 2.  Nope, not being 2.  So, being who I am, I took him in to a psychologist and explained some of his...well I call them quirks.  LOL She decided it was a good idea to evaluate him.  That shocked me.  I didn't really think he'd even be considered for an Autism Spectrum Disorder. And before you stone me, I am used to severe Autism, not High Functioning. What the heck do I know? Well I should, but no I didn't.  So, the evaluation process continued for a few weeks and she had me come in for a meeting to discuss the data.  As we discussed the data, I just continued to be the person saying no...this isn't my child.  So, she took out the DSM manual and proceeded to go through the entire Autism Spectrum Checklist with me.  More of it fit him...and it made me want to cry.  How the hell did I not see this? Why was I in such denial?  So, I walked out of the office, barely able to think.  Holy moly I do not like that feeling.  I felt like a terrible mom.  I am a freaking graduate student in special education and I can't even see my own son's Autism.  Yeah talk about your horrible feeling...

So, now we're just waiting for another doctor to confirm it and help me come to terms with it.  For the most part I have, he's still the same kid...just quirky lol.

So, my middle son..he's struggling in school.  He has been having a lot of trouble focusing in work on his own.  He is barely passing.  And he's in kindergarten.  How can you fail kindergarten?  Well, let me tell you, the academic pressure starts the moment they walk in the door.  It surely is special...and it makes me...almost...want to homeschool my kids.  I don't have that in me.  But anyway, I started noticing he was very aggravated with lots of things and school made him angry, and that anger is kind of scary.  I, again, do not know what O.D.D looks like.  I just thought he had a crazy temper, kind of like me when people mess with my kids.  No, not a chance.  His anger started getting out of control.  Either I have been blind to it, or I really just didn't see it to be that bad.  When he started threatening us, like threatening to kill us, or threatening to do harm...I knew we had to seek help.  Plus, his doctor had just diagnosed him with ADHD and O.D.D...I didn't believe it, so we got a second opinion.

The second opinion took time, but she came to the same conclusion.  I saw the ADHD, but not the O.D.D, so I did some research....this fit him, almost to a T.  I do not think my son is a bad kid, no matter what these symptoms are. He is an amazing child. He is sweet, and can draw so well for his age....but he still has anger problems.  So...we are waiting for the final doctor appointment to help me and maybe get him some anger management as well.

I am learning.  Having three kids, who need several forms of therapy is exhausting and fascinating.  I have learned new things that I can share with other people and other families.  

I got really mad when someone told me that God gave me what I could handle.  I couldn't believe it. Who on EARTH would curse someone with three different disorders...how the hell does that work? How on earth is that even fair? What God would do that to me and my family?  

I had a to come to terms with it myself.  I am grateful to have so many people who will listen to me, even when I need to hear suck it up.  There are far worse things in life, but...right now I am learning now to see this as a well struggle.  Life gives you struggles...you just deal and move on or move with it.  I am sure there will be some more tales to tell in the near future.

Sunday, January 20, 2013

Fly on the Wall: What you'd hear...

You ever just think about the conversations that go on, on a daily basis within the confines of your house?  I swear I don't make this stuff up.  

My youngest son is potty training. He is very literal and serious.  One day, he sat on the potty, trying his hardest to go potty.  I heard such a heart-broken little voice trying desperately to go potty and he told me this:

"Mommy, I can't go potty."

"Well why not baby?"

"Mommy, my penis is broken."

Trying my hardest not to giggle, I had him try again later.  He thinks if he can't go, he's broken. Silly boy.

Age and kids...don't ever ask for an honest opinion from a child. They will tell you how old you look.

My husband was playing around with the boys and asked them how old they thought he was.  

"Daddy you're 45 or 50."

I laughed, but not for long.

"Mommy, you're 40 or older right?"

Blanching I giggled as they re-corrected that age to be 16.  Oh my goodness, what a bunch of jokers we have in this house. 

Monday, November 26, 2012

Another IEP...oh joy.

I haven't written in a while. Let's just say, life got in the way.  I've been dealing with a husband that left for a month, making life choices that will determine the path I take, and another child going through the IEP process.

Quite honestly I feel like crying. I feel like I completely failed my middle son. I'm so busy working with my oldest and helping him with his needs that I did not do enough for my other sons.  I know I am not failing him, but it sure feels like it.  Sometimes I wish there was more than one of me, so I could help him get done what he needed to have done.

So where to begin with Christian?  Well, I've always had concerns about him, I just don't know how to explain it.  Yes, maybe you could call it the paranoid mother, who watches all her kids after having one with Autism.  He's had multiple ear infections since he was a baby. Thankfully, he was able to avoid having any hearing problems, for now.  (Unless you count selective hearing.)  He's had 4 surgeries as well, before the age of 5. Two sets of ear tubes, tonsils and adnoids, and a fun little incident where he punctured his ear drum and it had to be repaired in a hurry.  He's definitely one of those rough and tumble boys. We jokingly say, filling the ER quota...but it's no joke with him. I think I have a few gray hairs already from this kid.

So when he entered his first year of preschool, at 3, I watched his every move like a hawk. Yes, I am paranoid. But it's for the best. I only want him to do well in life, and I don't want to miss what I missed with his older brother. Call it my guilt trip.

His first year of preschool was very difficult. The teachers decided to place him in a class that was older than he was, due to his maturity level. Honestly, that was a mistake. He was not ready for that. They focused on kindergarten skills and he couldn't keep up.

So the next year, we put him in a preschool that was amazing. (If you haven't heard of Headstart, you should look into it.)  His teachers were always on par with what he needed and I never felt that he was behind. He excelled so much.

Kindergarten began. I was very excited for him. He's my first 'normal' kid and I was hoping that he'd excel.  In all honesty, he hasn't. And it's terribly disappointing for me and my son. He wants so badly to do well, but he seems stuck.  He gets angry and I honestly have never seen the amount of rage from a kid, that I have from him. He hates going to school, he cries when we have long breaks and then has to go back.  It breaks my heart.

I have had him evaluated for ADHD and the doctor came back with O.D.D as a diagnosis, which I will not accept. I want a psychologist eval, not a primary care doctor that we barely see. He also prescribed some ADHD medication and at 5, I'm not really comfortable with that, especially when he's not been evaluated at school or a psychologist. But that's me.

So now it's the waiting game. On December 11 is his IEP and I'm praying they have found a way to help him. Until then...just waiting and waiting. :/  

Sunday, October 28, 2012

Celebrating the little things. Don't ever take them for granted.

I think as parents, sometimes we take the little things for granted. We expect our kids to walk at certain times, talk at certain times and do things that are expected that the guidelines are given to us by doctors and certain people.

I've never had anything go correctly or in the guidelines as doctors would have. I don't know what to expect as a parent. My oldest son has always been off the guidelines. He didn't walk when he was 'supposed' too. He didn't talk when he was 'supposed' too. And you know what? That's just fine with me.

Why? Well...I don't really think we appreciate any of these small things. I mean at first we do. We're so excited when our kids take those first steps, or say those first words. But for how long? I often hear many parents telling their kids to shut up. That irritates the hell out of me. Caleb didn't talk til he was 4. I would have given anything to hear him chatter up a storm. Or the fact that he struggled with walking until he was 3. Yep, another thing that I wish I could have seen and celebrated.

So with my other kids, I am so excited and just enjoy every little moment that they do the 'normal' things that other kids do. Maybe Caleb was given to me so I can appreciate life. I find myself cheering when my youngest son puts on a shirt. Or when my 5 year old writes a word.  I enjoy life more now that I've had to see my son struggle with it. It's so amazing to see what he can do now. I am so proud of him.

Enjoy the little things that your children do. Don't ever take another second of what they do for granted. You never know when they might not be able to to it. Every little thing they do is amazing and a miracle.

Sunday, October 21, 2012

Learning to let go....the case of the clingy parent.

This isn't my brightest moments as a parent. I have always wanted the best for my sons. Having a son with Autism has been...terrifying and enlightening at the same time. I don't always know what to do.  Balancing being an advocate for my son's rights and letting my son doing new things...it's hard! I want him to do new things, but I don't always know if it's the best thing for him.

I have a confession to make. I am that parent. I am paranoid. I am always terrified that Caleb isn't going to be comfortable in a situation. I hoover more than I should. I ask a 100 questions about certain activities when most parents ask one or two.

Why? Well, I can't say it's his Autism. It's me. I am a scared parent. I confess to being that parent. I want him to thrive and succeed in all possible ways. But I'm starting to realize that I am holding him back because of my paranoia.

I don't honestly know how to get rid of this fear....he's 11 now and I am starting to realize that I am a big fat baby when it comes to letting him do stuff. I make excuses and say oh no I don't think so...when I really don't actually know. It's time for that to stop. I have stopped for the most part, but there are still some times where I catch myself going back and making excuses.

Would I want him to make these excuses? Do I want him to use his Autism as an excuse? Nope. I have never ever allowed him to use it as an excuse, so I need to stop doing it myself. He has issues, he has problems, but he can cope through situations. I need to suck it up and be less of a clingy mom.

I am so proud of who Caleb has become. Just look at this young man. Look at how handsome he is. He has come so far and I need to allow him to become who he is meant to be. Time to let go and let him be the man he is meant to be. Yep...it's going to be hard. But...it has to happen.

I don't think I am a bad parent. Just learning as I go...and I have learned that I need to let go. No more clingy mom. Well...in some cases maybe, I need to let go and let him grow.

Saturday, October 20, 2012

Why I hate the 'R' Word.

I am pretty open minded. I don't mind talking about random subjects. I will even spar on the very uncomfortable topics, such as abortion, religion and politics. But one thing I am a bit sensitive too...it's the use of the 'R' word. I don't like it. Nope, not one bit. I know it's a medical diagnosis. And I know it's used in certain diagnosis'. Heck, my son had a diagnosis of mental retardation before he was diagnosed with Autism.

So why don't I like it? Story time. Yes, I am ashamed. I've used it. More than I should. I've used it in reference to people and other things that I really shouldn't have ever done. But I know better now. I have respect and I would rather use terms responsibly.

Another thing I understand and would like to address. By making the use of a word bad or something that people get upset about gives it power....yeah I get that. But I also understand there's a certain responsibility we have as humans.We should treat people respectfully. I'm not going to throw out certain words, because I believe they are disrespectful. Maybe that is giving the word power, but I disagree. I would rather respect my fellow mankind than disrespect them.

So what really made me hate the 'R' word? Well that's a story of epic proportions. My son was 3 at the time and I wanted to have him in a church environment. We put him in a church preschool, after telling the director/teacher all about Caleb's problems. (He hadn't been diagnosed with anything at the time) She was so nice, told us that she would help him in every way possible. I was so relieved. I wanted some exposure to a church environment and thought this was the place. I couldn't have been more wrong. I came to pick him up from school one day. The teacher/director was standing outside the classroom chatting with another person. I thought it was a bit strange to leave 10-12 preschoolers alone in a classroom, especially my son who has some issues with scissors and such. He had been known to cut things that he wasn't supposed to. I went into the classroom and started to get Caleb's stuff and she came in there like a hurricane.

I stood there and listened to her as she proceeded to tell me about my son's day. Caleb had an accident and had been left in the bathroom all by himself. She told me that he had taken his feces and wiped them all over the wall. Internally I giggled. I mean, who leaves a kid alone in the bathroom like that? Then came the worst of it. She told me that my son, the light of my life...was a retard....was the stupidest child she had ever had in her class. Yes, I am not kidding. I think my mouth dropped. I don't really remember what happened next. I didn't say anything. I saw red. You don't call my son that. You just don't. I don't care who you are. I don't care if you're angry. You don't call a child names, especially one who has an obvious disability. I left and found out later, that she had left my son covered in feces which resulted in him breaking out in a rash. Yep...pissed off mom. I called and asked for my son to be removed from the program after that. I was done.

So, that is why I don't like the use of the 'R' word. I won't yell at you. I will educate you and probably ask you to not use it around me. It's just not a word I like...and I will probably get kind of angry if it's used inappropriately.

Thursday, October 4, 2012

Debate Fest Denver 2012: Spreading Autism Awareness

So yesterday I got to do something pretty darn fantastic. I went to Debate Fest in Denver, Colorado at the University of Denver. I was, quite frankly, a bundle of nervous energy. I was terrified. People from all over the world were there. Press, Secret Service, Politicians, crazy protesters, etc...it was CRAZY!!!! But I wasn't there to talk politics. I was there to raise awareness. Our goal was to get at least one candidate to mention Autism. We really need Autism to be on the agenda, because we need our voices heard. We deserve a voice and I was determined to have that voice heard.

I arrived in Denver around 11. We weren't allowed inside the Debate Fest area until 2. So...we sat at Starbucks for 3 hours. That was interesting. The people who went in and out were a mix of press and people all over the world. The team I was with would go up to the press and ask them to stop by our booth/tent and learn more about Autism Votes and etc. I'm a bit shy with the press. Then the Secret Service popped in. That was funny. One of the girls from the group ran up to them and asked if they were. They answered in the affirmative. I laughed. They were giving it away with their little ear wires sticking out. We wanted to take their picture, but...they thought we would post it on YouTube. Apparently YouTube is where you post pictures now...haha

Another amazing person we met was an illustrator from the NY Times. She saw my shirt and asked about Autism Votes. I proceeded to talk to her about it and then asked her about hers. She was from Artists Votes. She told me about her cause and why it was important. She then proceeded to tell me about what she did and what she was doing professionally. It was so cool! Meeting an artist of her stamina. I felt so honored!

So around 2, we all walked back to where our site was, wearing our awesome little amusement park credentials. Yes, our credentials were wristbands that you get at either a bar or an amusement park...it was hilarious. I giggled. I looked around and saw all the other booths and tents. There were many different views, many I don't agree with, but yeah...I'm not going to write about that today. Ha.

The table was fixed and ready to go, when I noticed the sign was backwards. I asked if I could fix it. The ladies grabbed a few zip ties and I jumped on a chair to start hanging the sign back up. As I was getting down from fixing the sign, Fox news comes over and asks me to get back on the chair so they can get me in the camera hanging the sign. So...my butt made the news. Awesome haha. I laughed so hard.

The next thing I got to do was a radio show...I've done one before, but not in public. HOLY COW I was a nervous wreck. There was a lot on the line for me to get everything right. I had a lot of information to get out in about 90 seconds to 2 minutes. I literally had no time. I was shaking in fear. I don't like public speaking at all. They handed me the microphone and I kept lowering it down to my knees. I wasn't sure I could do it. But then I remembered. This wasn't about me. This was about helping get more awareness. I wanted to help others. I needed to suck it up and just do it. Sure...I was near tears and shaking badly, but I got everything out. I said what I needed to say. It went quite well. I felt that I was able to get what I needed out and speak on behalf of my cause.

Debate Fest opened at 3 and went til 6. In that span of time, hundreds of people swarmed in. They came over to our booth and our team increased their awareness of what Autism Votes was about.  Now you may be wondering what Autism Votes is. What we want is a reform on insurance. Right now it doesn't cover all therapies for kids with Autism. And that's not right. We want Autism on the agenda of every politician. We want it addressed and we will continue to show up at every debate, every door, and I will be there with them as long as I'm able. I don't just want this for children but for adults. Children are covered but what happens to the adults. We aren't talking about that and that scares me for the future of our kids. I have a son to think about and so do many others.

Towards the end, I started getting, well in my words, pimped out the the media. LOL I went to all the major news stations, standing in front of their cameras so they could see the Autism Votes tee shirts. MTV panned a shot of our booth and happened to get me. I gave them a cheesy thumbs up. The cameraman laughed. Hey I got my 5 seconds on MTV! Bwhaha

I drove home and contemplated a lot. Why do I do this? Why do I drive out of my way, spending hours away from my kids, talking to people I don't know, publicly speaking when I am terrified, and all for free......I'll you why, because if I don't, who will? I have a voice and it must be heard. I want people to know why this is important and why you need to know that Autism isn't just going to disappear. We are going to continue to be out there. You can listen and I hope you will take something away from it. Because that's all I want. This is so important to me.