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. :/  

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.

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.

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.

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.

Where I am today

I am not proud of where I've been. I am, let's face it, a food addict. I would like nothing better than to just shove my face into a bucket of chocolate and go to town, but I prefer living.  And this is what it got me... I was miserable in my body. I wanted to be healthy. I got a wake up call a few years ago after having my third child. I was at risk for diabetes. I fought like hell to overcome it. Nothing I did worked. I tried diets after diets...fad after fad and I failed.

I finally found one after talking to a nutritionist...eating a diabetic way. I should have just stuck with that, as I had gestational diabetic with pregnancy and then again with my third pregnancy. But let's face it, who wants to be on a diet? Not me. But this isn't a diet. This is a lifestyle change. You want to change? You change your life. You want this weight off, then make changes to do it. Start making little changes. If you focus on a high goal, you will fail. I did for a long time. This did not happen overnight. This picture above is of my oldest son. He's 11 today. It took me years to get this off. The last of it came off in the last 2 years, when I really started to focus on making myself healthier for me. I want to live a better life so I can be there for my kids. I really think that's important. People can tell you all this information. I can sit here and blog all day long about how you should do this and that and blah blah blah, but until you want to change, nothing will happen. This is what I look like today. I am down nearly 150 lbs. I am very very close to my goal weight. It's not about what I want to weigh anymore. It's about living a healthier lifestyle. I want to live a healthier me so I can be there for the important moments for my kids.

When friends become family

I got a call from the Autism Speaks committee after completing the walk in Denver. They asked if I would be willing to help put together the walk in Colorado Springs. It was the first walk in Colorado Springs to be done by Autism Speaks. This was a pretty big deal. Overwhelming would be a better term you could say. I have done charity work, but not on this scale. Holy peaches this was crazy. I didn't realize how much responsibility entailed a walk for charity. There are so many details and they have to be done in a very quick amount of time.

I was in charge of the corporate sponserships. First off, I am..not the best at getting people to give money. Honestly I am terrible at it. I don't really feel I lived up to my end of the deal, I really tried my best to get businesses to donate. In the end, I found one. My son's therapy clinic. They donated between $2-2500. I was pretty darn proud of that. They also sponsered my entire team's tee shirts and I was so excited.

The best part was these people in this picture. 

They came from all over Colorado Springs. They raised nearly $700. I can't take credit for any of this. They came and supported something that means a big deal to me. Some of them are connected to Autism, others were not. They came to support us, and it was our first time meeting. We met on Facebook through a support group called Support for Special Needs: Military or Not. 

I'm not one to get mushy or...emotional, but this meant a lot. To have people come and support you, it means the world to me. I didn't know them well, but they came anyways. And to that, I will be forever grateful. You have shown me what it is like to have family out here.  

I want to karate chop Autism. That is all.

Well...some days you win and some days you lose. I have never given up on the fight on getting my son the best service, the therapy he needs and anything else that Autism goes with. But...sometimes you can't count on mother nature. Regression, puberty, deployments, people coming in and out of your life and making schedules SOO hard.

 Caleb has been having some noticeable changes over the past few months. He's been full of rage, regression has been apparent, and well...things just didn't seem right. I have been fearful. Fearful that he was slipping back into his Autism and going to a place where I couldn't save him. But I know that's not true, because even if he slides to a place where I can't communicate with him. I will always be there for him. I will always fight for him. I will always make sure he has everything he needs in life. It's all I can do to ensure he has a good life. What else can a mother do? It's what we all want in life.

Developmental pediatrician appointments scare the crap out of me. I know they shouldn't, because they give you answers, but they also give you answers you don't want. For months, I've known something was wrong. I just knew it, call it a mother's intuition.  But you just don't want to say it out loud, because then it's real. It's real and you have to deal with it. I hear from other people, oh no he's going to be fine...call me a pessimist, but I just know that I'm going to have to work harder. Not that I mind a challenge...I am a fighter, it is in my blood. I am just tired. When you have a kid, like mine, it's intense 24/7. I get a break, sometimes, but mostly I am his whole world.

Anyways...needless to say, I was proved right. I was told his diagnosis from PDD-NOS could now be considered severe Autism. Commence kick in the gut. I was broken, or at least that's how I felt. I just wanted to break down and eat a whole box of chocolate something. But I didn't. I just continued on with the day. I mean that's what we do right? We get bad news, we take it, and then we move on. What more is there to day? I am upset, and I want to do something about it, but for me...no. I will fight harder and look for ways to help more. Who knows what will happen in the future, maybe it'll change. But for now...I would love to karate chop Autism. Yep...go away. I don't like you and you can take yourself away.

Regression and how much it sucks

Today I cried. I cried over the fact that I felt like I was losing my son. It felt awful. This is regression.

Regression is when you see your child slip into a state of being and you can sometimes rescue them from it. I'm not sure I can rescue my son from his regression. Yep, it sucks. I hate it. It makes me angry. How dare you steal my son from me when we've worked our tails off to get him to this point.

But I smile through my tears, I'm not done. I'm not done fighting. If my son regresses, I'll find a way to reach him. If he regresses to a point where I can't get to him, I will love him as who he is. I will love him for his normal.

Listening to this song helped me a lot. I'm not giving up. NOT ONE BIT. 

 

Winter Vacation: Torture or Bliss...

Ah the time of year when parents either dread or are so excited to get their children back for two to three weeks, dependent on the school.  I, personally, cannot stand winter break.  And here's why: my son is a routine-based kid.  Well heck, so am I.  I like my routines, I create routines for this family and we thrive off of them.  And then here comes winter break to mess it all up.  What does winter break bring?  Meltdown city!!!

 Usually we try and take a trip back home to see family and that also results in more chaos.  Don't get me wrong, I love seeing my family and my husband does too.  But the poor kids are so off schedule and moody by the time we head back that we're all a bunch of crab sandwiches by the time we make it back home.

Also back home is our developmental pediatrician and our psychologist.  I usually am very apprehensive about those visits, because they can mean a few things.  1.  Your kid is regressing and needs major medication changes.  2.  He's doing great.  This trip was a #2.  AHA...lol ok.  Forgive me, I'm about to start potty training child number 3, so my mind is full of potty slang right now.  Caleb is doing great.  He only needed a minor adjustment with his medication and his growth is off the chart.  He's already over 5'0...gasp... Dear GOD, save me from puberty...how tall is this kid going to be???  I mean really??  I don't want to look up to him quite yet.

Winter vacation is almost over and I'm ready to get back into our routines.  The kids back in school, dad back to work, and me slaving over schoolwork.  Yep I'm a creature of habit. :)

Chronicling a week in our life: Monday-Friday...school, therapy, and work

So, I've been thinking.  I do a lot of talking about what life is like.  I've not actually said what we really do.  So, here is my week-long chronicle.  This was before the school year ended.  You might want to take a nap afterwards, because after writing this, I know I sure wanted too.

Monday: 5:45 The alarm goes off.  Scott is already gone for work or PT.  I either drag myself out of bed or wait for the second alarm to go off.  I usually set two alarms for the days I feel lazy.  That way, I never oversleep.  By 6:00am I am up and getting dressed.  I don't usually have time to take a shower, so I throw on some clothes, casual for hanging around the house or business casual if I'm going into school to work with students with special needs.  I am dressed and ready within 5 mins.  I don't usually put on my makeup until after dropping the kids off at a school.  I run downstairs, make Caleb's lunch, start prepping breakfast (I nearly cook breakfast everyday for my kids), get out all medication needed for everyone (which is quite substantial in the morning), and make sure shoes and jackets/coats and hats are out and ready.  At 6:30 if the kids are not already up, I get them up for school.  Christian, Mr. Fashion man, usually picks out all his own clothes and looks pretty good in them.  Cole doesn't get up until I can coax Caleb into his clothes, which can take between 15-25 minutes.  By the time I get Caleb into his clothes, I'm tired already.  Cole is bouncing in his bed, demanding to be picked up by the time I get to his room.  I quickly get him ready and then herd the kids downstairs, where we frantically take medication, eat breakfast, and wait for my friend to come to the house and give us a ride to school.  (When Scott wrecked his car, not his fault, by semi in October...they didn't give us nearly enough for a car to replace it.  We're saving and saving, but it's taking a bit.)  We head to school and make it to Caleb's school by 7:20-7:25.  I tell his para about his morning and how the weekend went, so they're prepared for anything that they may need to know.  Then I run back to the car and we head to Fort Carson to pick up my car or back to my house depending on the shift my husband is on.  If he's on morning shift, I get to see him in the afternoon and spend more of the day.  If he's on late, he's gone til 7-8.  After I have a car, I thank my friend and spend some time doing laundry or cleaning.  After that, I spend some time studying, while I wait for my 10 am meeting phone call with my boss who will give me the run down of what he wants me to work on over the week.  Around 11:30 I prep lunch for the younger two boys and myself, always having some studying going on with me.  We play and I study randomly.  I alternately let them play with each other, that's the lovely thing about siblings!  Built in playmate! :)  Around 12, I put Cole down for his nap and have Christian lay down with some books for rest time.  I am either working or studying on whatever needs to be ready for my class, which is at 4:30 pm.  At 2:05, I get Cole up and prepare to pick Caleb up from school.  We get our bag of stuff ready to take with us, because we won't be home until around 4.  I pick Caleb up from school and head to our first therapy of the week: physical therapy.  We spend quite a lot of time at this clinic, 4 out of 5 days, soon to be upped to 6 days.  Therapy is wrapped up at 3:30 and I run home in time to meet my friend, who is babysitting for me.  (Or if Scott is on early shift, I pick him up before I pick Caleb up.) I grab my class stuff and am back out the door and am in class from 4:30-7:00.  I get home and then spend what I have left with the kids.  Usually Cole is already in bed and Christian is headed that way shortly as well.  Caleb and I spend some time hanging out, either reading or talking about his day.  After Caleb takes his last round of medication for the end of the day, it's off to bed and I get to spend some time with Scott and work on more homework.  Around 10-11 we both turn in.
Tuesday: This day has a similar routine, except that Christian goes to school.  Caleb goes to school at 7:30 and he goes at 7:45, so it works perfectly for us.  This is the day where I usually go work with the kids with special needs down the street from me.  I usually go in right after Christian goes to school and stay there until around 9:30-9:45.  I pick Christian up at 10:40 from preschool.  I get lunch ready at 11 and try and get Cole to take a fast nap as on Tuesdays I have to pull Caleb out of school early to take him to Occupational therapy.  Around 1:15, we pick Caleb up from school and head over to the therapy clinic.  Around 3-3:15 we get home.  Dependent upon what shift my husband is on, I pick him up right after therapy or before, dependent upon Cole's mood.  At 3:30-4:00 the ABA therapist arrives at our house.  Caleb does ABA therapy for 1 1/2-2 hours.  It is a very intensive therapy and causes Caleb to have some pretty intense meltdowns.  Around 6:30 I leave for class.  I am in class til 10:00 at night.  I don't usually get home until around 10:30 from that, where most of the house is in bed.  Scott is the only one up or if he has early shift he's already in bed.  I usually work on an assignment, because I'm too wired to sleep and then head to bed right after.
Wednesday: