Sunday, March 15, 2015

Blog #1 People I'm Grateful For Pt 2 of Brock's Project

I haven't ever written a blog dedicated to a specific person before, but I'm going to start for Brock. Every Few weeks I'm going to write about a person who has been a big support system to Brock along this journey. It's important for Brock to know he has an army of people standing beside him.. The video I made for Brock he enjoys still, weeks later he asks to watch it right when he wakes up, and right before he goes to bed each night . I never knew a year ago how utterly alone I'd feel  as Brock's main caregiver, and didn't initially reach out to anyone until this person started reaching out to me. He's persistent and been one of my best friends since we were kids, and in turn has become Brock's biggest hero. I had asked people to send pictures to me a few weeks ago for a project I'm working on for Brock, and this is the second part of the project..So to start this out I'm going to dedicate this blog to probably Brock's biggest champion, my brother Chris who would never ask for any sort of recognition because he does the things he does because he has a huge heart. 

Growing up my brother Chris and I were always pretty close until our teenage years when we drifted apart. I was into running, softball, and I'm not ashamed to admit I went through an extremely  girly phase (I claim temporary amnesia for real) and my brother Chris was into football, baseball, and really we went into completely different directions for awhile which in turn made us not as great friends for awhile. While I’m not shy by any means, I'm more introverted and like to keep to myself and privacy is extremely important to me. Chris likes privacy too but he thrives more being surrounded by people..so it wasn't until I was pregnant with Brock around 7 years ago that we really started talking regularly again. Chris was one of the first people to hold Brock after he was born (he had rushed to Wyoming in record time from Eau Claire) and he has had a bond with Brock ever since that  I'll never understand, but forever be grateful for. 

When Brock was just a few years old Chris moved to Nevada for better opportunities , and I was crushed for Brock. I didn’t think their strong bond would hold but I was so very wrong. Brock considers Chris his biggest hero, out of the hundreds of superhero action figures Brock owns, when asked who is his favorite he always says his Uncle Chris. A year ago when Brock was diagnosed officially with Autism the first person I called to tell was my brother. Even though I was expecting that diagnosis, I had felt like my world was tipped off its axis. It's a feeling of defeat, and relief. I was defeated because I didn't know where to go from there, and relieved because there were reasons behind every single delay Brock was experiencing. The first thing my brother said was “ok, he has Autism. It's just a label on what you already knew Lindsay. It doesn't change anything, he's still the same person.” Even though I knew that, it was a good feeling to hear them from someone else. He didn't tell me everything was going to be ok, because we both knew there would be more extremely challenging times. I appreciate when people don’t use words just to make you feel better, to cover up the truth of the situation, but can still get their point across by only stating facts. I hate lies, even white ones, especially when it comes to my child. Usually when something big happens in my life I share it with the bare minimum, only the people who actually need to know, then deal with things on my own. Like I said, I'm quite introverted. But I was finding it hard to do with Brock's situation. I wasn't happy with the minimal treatment options available, and I knew I didn't want Brock to ever feel like he needed to hide who he truly was so this is where this blog came into play. I found that it was actually quite lonely being a parent to a special needs child, and not many people felt comfortable talking about it..which just doesn't sit well with me. During that time my brother would reach out, and I'm the queen of either losing my phone or ignoring phone calls. I misplace my phone constantly and it's usually on silent, so trying to find it is like finding a needle in a haystack. But my brother is persistent, and persistence pays off. I started opening up to him about the challenging times, and he answered many late night tear-filled phone calls from me. He'd always have the same advice, “Lindsay, I know it seems like a lot, but these are just stepping stones to cement Brock's future.” Those weren't his exact words, but along the same lines. “Keep up with the therapies and you’ll see Brock start to succeed even if it doesn't feel that way right now.” “So what if he needs special education, if anyone thinks differently have them talk to me. You're doing the best you can for him.” “There will always be someone who thinks you're doing it wrong, but the only one who's opinion matters is Brock’s, and I doubt he'll complain that you did the best you could for him.”  I never doubted his need for therapies or special education, most of our conversations surround the negative feedback I've gotten from others. I'd like to say people's words don't affect me, but that would be a lie. 
I'm a parent that was thrust into a world I barely knew anything of quite fast, and while many people know very little of Autism, there are sure lots of opinions. When you are a parent of a child with special needs those opinions come out more, whether you ask for them or not. While I don't mind advice, I mind when people cruelly go out of their way to find something wrong with everything you do. Which has unfortunately happened frequently since the day Brock was diagnosed. Keeping quiet isn't an option, acceptance is though. Openly talking about Autism opens many doors, and I would never shut the door on an opportunity Brock deserves. 

So to end this, Having a strong support system means the world to me. The blogs about each person won't be in any particular order, there's not one person who's support that means more to me then the next. I saw it fitting to start with my brother Chris based solely on his irrevocable bond with Brock. They’ve been best friends since the first time they met when Brock was only a couple hours old. Chris calls Brock many times throughout the month, and will sit and listen to Brock talk for hours sometimes about just Star Wars and will never get the slightest bit annoyed. Which says a lot because I even can get annoyed sometimes when Brock talks about the same thing over and over. I have learned a great deal of patience, but I'm not a saint. I'm human, and I'm not perfect but I wouldn't change one thing about him. They also do FaceTime and Skype and will sit and makes faces at each other, I'm shocked their faces don't get stuck in some of the positions they put them in. Brock looks forward to those times, and Chris is good about calling when he says because he knows how much Brock truly looks forward to those times. These blogs won't always be based off some huge gesture, if you've ever done something that may seem small to you, like stopping for a moment to acknowledge Brock and really truly listen to him..you may find yourself featured in one of these. I’ve learned that the smallest of things mean the most to Brock. When someone stops and says hi to him anywhere his entire face lights up, and he will talk about that person endlessly like he just met his new best friend. But not the best, because theirs one kiddo who holds that title from his kindergarten class, that's most deserving. 
This is my brother Chris (he sent this picture for this project) 

Monday, March 9, 2015

Spread the Word to End the Word

We pledged and support the elimination of the derogatory use of the R-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.
Make the same pledge at www.r-word.org
I've always been laid back on a lot of things..sure things bother me, but usually not enough where I'd go out of my way to try to put an end to it. That was before having a child. I've learned quite a few things about myself since then, like the lengths I'd go to protect my child from anyone or Anything that would try and hurt him in anyway. Even people close to him. I've been an advocate for those with special needs for about ten years now. I started working in a group home for women with developmental disabilities and knew right away I wanted to change how people perceived those with special needs. It's such a big unknown area to a lot of people, where they shy away from anything to do with them for whatever reason. I've seen a lot of people lost in the system when they have the skills and knowledge to live independently if they would just be given a chance. When Brock was diagnosed with Autism I knew I would do everything in my power to not let that happen to him. I will always be his biggest advocate and make sure he lives a life up to his full potential. Through working In group homes, and having a child with developmental disabilities I've heard the R-word in passing more then I'd ever thought would happen. The times that I've heard that word used I have no problems telling them exactly what I think. Even when they pass it off like it was a joke. 
There is no faster way to make my blood boil then by using the R-word. It's disgusting, hurtful, and deragotory. It's saying there is something wrong with having special needs. There is no good reason to use that word, even if you are "joking". There is nothing funny about it. I absolutely do not allow the use of the R-word or any sort of name calling in my household. We need to build each other up not bring each other down. Brock has been taught from a young age the power of positive thinking. Of course I've faced challenges from outside influences with Brock, but if you don't use those words in your home your children will know and understand how wrong they are. Please pledge today at www.r-word.org to stop the use of R word from everyday speech! 

Friday, March 6, 2015

Autism Awareness Video for Brock

Over the last month I was working on a project for Brock...during all the fundraising for the Steps of Hope Walk I did a few give aways  for items I received with the team Assburgers logo on it..and had shirts made as well, so anyone who had gotten an item I asked if they'd send a picture of them using the item for this project. With Autism Awareness month right around the corner I wanted to do something special for Brock, something he could hold onto forever. There's so much I always want to say to him, but he isn't at a point where he'd understand through conversation. So I put together this video to show him how much support he has. When I was finished and sat Brock down to watch it, he ended up watching it on repeat for a good half an hour..he didn't say a word but kept squeezing my hand. The video is very emotional for me, because it was the first time I was able to show Brock all the love he's surrounded with. While he knows the word" I love you" and all that...I don't think he truly got it until he saw this. I'm going to try doing more visual things to show him what different feelings mean from me to him. Please enjoy. And feel free to share.
https://m.youtube.com/watch?v=H4EnreC1yz8
^^^^^^^^^^^^
Click on that link. 

Sunday, March 1, 2015

Pictures from the Steps of Hope Walk 2015

Here's a few photos from the MN Autism Society's Steps of Hope walk from Today..For those on my Facebook page I added them there also. It was a fun day, and I'm really excited to get Brock involved in a few more programs through the Autism Society. I've never seen him as relaxed as he was today..