Sunday, November 30, 2014

Autism AFFECTS you too

Yes, you read that right. If you associate with my child in any way, shape, or form Autism affects you too. Maybe everytime you talk to my child you think he's being rude , or doesn't like you. He isn't and he does. Brock doesn't know how to communicate like you, and I do. He tries his damnest to escape his world for a minute so he can fit into yours each time he has a conversation. Autism has affected you that way. Maybe you try to avoid him at times because all he talks about is space and pokemon endlessly, or you brush off conversations. Don't. Try bringing up topics you enjoy so he can learn about you. Open a door so he knows that YOU like him. Brock doesn't understand social cues, so he won't know when you're bored. Who knows, you might bring on a new interest for him, and than you'll have something in common. Autism has affected you that way. Even though he's only six his mind holds so many fascinating facts. Maybe your child goes to school with Brock, and he's made them cry. Just know that Brock would never intentionally hurt someone, he has a heart of gold. It's ok to be upset with my child for hurting yours. I'm doing my best by bringing him to therapy to learn proper social skills so he can interact better with your child. Autism has affected you that way. Maybe you've seen us out in public and you think my child is being a brat, and I'm letting him get away with things. I'm not. We do things differently than you. While it wouldn't work for your child it works for mine. You may try to step in, please don't unless I ask for your help. You may think it's your right as a fellow parent to step in, but it isn't. I'm not being rude, I just don't want the situation to escalate, because I know my childs triggers. If you see me at a store sitting beside a clothes rack trying to coax my child out, instead of shooting dirty looks, come sit by me and talk about inconsiquential things if you feel compelled to do anything. Autism has affected you that way. If you're a close family member or friend and wonder why Brock seems to love you one minute, and wanta nothing to do with you the next, he doesn't. Brock loves with his whole heart even if he can't express it the same. I also feel like Brock doesn't like me at times. I just know how to read his body language. Brock hardly shows me affection and I'm his mother, I get the hurt. This past week Brock told me he likes me because I'm safe and warm. That's huge for him because his perception of relationships is all wrong. He doesn't understand how permanent they are. For him to recognize I'm safe and warm is much biger than any I love you's. The whole reason I started this blog was to raise awareness for autism, and that starts with the people closest to him. I don't expect people to change their lives around for Brock, but I expect understanding. I know the world doesn't revolve around us, but my world revolves around Brock. I've lost a lot of people along this journey. I get it, it's a lot of work to be in our lives. I can't put my 50/50 into relationships because Brock has 100% of me. I get the frustrations of cancelled plans, or always having to leave early, it frustrates me too. Autism has affected you that way. I hold no ill will. Autism is not a blessing, although I'm blessed we received a proper diagnosis. I've had to grieve the loss of what I thought my life as a parent would be like, because it's never going to be that way. I'm overcome with joy for all the new oppurtunties out there to help my child succeed. Autism isn't a blessing because i see my child struggle everyday. He can't dress himself, bathe himself, brush his own teeth or hair. He can't walk like you, talk like you, or eat like you. Even though mentally Brock is a six year old, developmentally he's three. That may not seem like a big age gap, but it is. I see Brocks real fears that lead to meltdowns over everyday things. Autism isn't a blessing because it's heartbreaking. Brock will probably need a lifetime of therapy to lead a normal life like you, and I. I will go to every 5k, charity event, and listen to every Autism speaker that comes my way to raise awareness. 1 in 66 kids have Autism, that number is huge. There are very limited resources to help this kids. We have been very lucky to live in an area with more resources than most, and a school system that knows how to work with autism because most don't. Each person who reads my blog becomes a little more informed each time, who may previously not have known. Maybe you'll see that bratty kid at the store next time, and stop and think before shooting daggers. I like spreading awareness that way. Or maybe you'll meet another kid like Brock along the way, and hear someone talking about how bratty he is, and how the parent(s) have no control and you can correct them. Because by knowing a child who has Autism you are affected, and by becoming informed you can help too by the smallest (but no less important) gestures.

Friday, November 21, 2014

You drink Camels Milk

So here's the deal, I love receiving advice and suggestions, but I don't like people telling me how to cure Brock's Autism. As of this day, there is no cure for Autism. When Brock was developing in utero it was decided that Autism would be a part of Brock. It's a package deal. My package deal, and I will do anything SAFE to help him succeed in life. I strongly believe Brock does not need to be medicated at this time, his behaviors can be controlled without a pill. There is no changing my mind on this. If at some point Brock feels he needs something, that decision is solely up to him. If you suggest a cure all, or a product that is 'proven' to reduce behaviors, please send me a reliable study of said product, and I will read through it, and bring it to Brocks Doctors, and Therapists to review. I will never make my child ingest anything that I myself wouldn't feel comfortable ingesting. I've heard of a lot of crazy treatments, the craziest being a bleach enema. I would never insert bleach in my body let alone my childs. It's called Miracle Mineral Solutions and it contains industrial strength bleach. Unfortunately many people have been hospitalized from this ''treatment.'' Raw Camels Milk was brought to my attention last week. The thought makes me personally want to throw up. While I read there is many health (puke) benefits to drinking camels milk, there is no valid proof it does anything for Autism. Chelation therapy, and hyperbaric oxygen therapy are the last two that have been emailed to me. While I appreciate the thought, Chelation sounds dangerous, Brock has no issues where I would consider it. And Hyperbaric Oxygen therapy would never happen. That would scare Brock shitless, and I'm afraid he'd regress by being exposed to that. Also I don't want to hear the name of a certain female celeb followed by vaccinations. I think she abused her celebrity by spouting off false facts. I don't care about anything she said. Other than that honestly I'm quite open to new ideas, as long as it's not followed by a cure all, or any harmful product. Read the fine print. I'm not looking to cure Brock. I'm interested in therapies that can help lessen behaviors so he can succeed in whatever he wants to do in life. I'm big into meditation, yoga, music therapy, and art as well. Things to help relax his mind. So if you have ideas that are similar to those, please feel free to email me.

Monday, November 17, 2014

I'm so excited I could....

For the last seven months I've been searching high and low for a local therapist who specializes in Autism for young kids...but no dice. Brock's been on a year long wait list to get into the U of M Autism Clinic since June, so he still has a ways to go. It's extremely important for him to start therapy as close to diagnosis as possible. The younger the better. So I've mostly been looking into big organizations, and skipped right over a private practice in my town. He specializes in Autism and Aspergers in children, and the practice is faith based..they work through a local Church. Saturday I'm meeting with them to see if they will be a good fit for Brock. Fingers crossed this works out!

Friday, November 14, 2014

Honesty is the BEST policy....or is it?

We teach our children (or in my case child) never to lie, and always be honest and truthful..yet everybody lies. Whether it's a little white saying you only had one donut for breakfast when you really ate two (guilty). Or a bigger lie saying you spent the whole day cleaning, when in fact you waited until the last minute while the rest of the day you spent watching prank videos on youtube (guilty again) ..Maybe you aren't truthful when someone asks if the shirt they are wearing makes them look bigger. So you're lying to spare someones feelings. Or your friend got a new haircut and they resemble Justin Bieber, but you tell them they can totally pull off a bob like Rihanna and look like her too. But when our child(ren) are bluntly honest, like they've been taught, we reprimand them. Children who are on the Autism Spectrum communicate differently. If I ask Brock how my hair looks in the morning, I'm not surprised or offended anymore when he tells me it looks like the poodles on Animal Planet we watched the night before. It really does too, and so does his. This morning I drove Brock to school, and he was bluntly honest to two other students, and I never wanted to spontaneously combust as much as I did in that moment. First he saw a student wearing some sort of pajamas and Brock asked if said student was sick, they said no, so he continued to tell them it then wasn't acceptable school attire. Which is one of my rules, no pajamas outside of the house unless you're sick. The other students clothes were horribly mismatched, and Brock had to point it out to them. Again, I'm a stickler on matching clothes, everyone always comes to me for clothes matching advice, Brock knows this and proceded to tell the student that. I pulled Brock aside and told him what he said wasn't ok, because it was very hurtful. He got upset because he was telling the truth, and there was no getting through to him. He wouldn't appologize because I always tell him not to lie, be honest, and always be truthful. Having ASD he can't process proper social etiquette. I don't know if I can fault him. Another time where I hoped the ground would swallow me up my dad had come to stay with us for a few days. He had put on some weight, and the first thing Brock said was 'wow you've gotten bigger.'' I told Brock that was not a kind thing to say, and he replied ''well it's true.'' To the outside world it may sound like Brock is being rude, and disrespectful, but I know my child. He is one of the sweetest, most kind people I know. I've always instilled the importance of manners, and being respectful. I have to look at things from Brock's perspective, and figure out a way to teach him how to control the verbal diarrhea. Because while I think honesty is best, I don't think it always is at the expense of hurting someones feelings. Communication development happens differently and more slowly in children with ASD. Like Brock, who is high functioning, he has an extensive vocabulary but lacks social skills. He only has a few facial expressions, he can't hold eye contact (it's physically painful) and his voice is monotoned. Although his voice increases, and decreases in volume the tone is always the same. So to end this here, I truly hope Brock's social skills and empathy improve by the time he meets his future wife. Because I can only imagine all the tears he would cause her. Like when he's 30, because at this point he insists he's going to live at home forever. Yikes!

Thursday, November 13, 2014

You can't feed your kid butt burgers for breakfast (how literal Brock can take things)

I always try my hardest to be as open and honest as possible with Brock. He's to smart for his own good, and nothing gets past him. With all the testing he's had lately, and all the times I've had to go to his school he's had questions. So I decided this weekend we'd have a more in depth discussion. Brock knows he has a form of autism, and he thinks its cool he has something none of his friends have. I forget how literal at times Brock can take things, so when I got to the part where I told him the form of autism he has is called ASPERGERS, andhe started cracking up laughing.I asked him what's so's what Brock said: Mom you are disgusting. You can't feed your kid ASS BURGERS. That's so gross. And you can't swear around kids, its a butt. And I don't want butt burgers its breakfast time. So I got all hyped up for nothing, and my kid thinks I want to feed him butt burgers for breakfast. So I'm leaving technical terms to the professionals and hoping Brock doesn't tell his kindergarten class his mom tried to feed him ass burgers for breakfast.

He's not throwing a tantrum over a toy, he sounds like he's hyperventilating

The meltdown. I'm not talking about a little crying jag over a toy, with some flailing arms and leg kicks thrown in for good measure, I'm talking about a true meltdown that people who have ASD get when they are on complete sensory overload. I was looking through one of my many journals I had written (pre diagnosis) on Brock and different behaviors he was experiencing and came upon the one for the first meltdown he ever had at 2.5 years old. ASD wasn't even on my radar than, I pretty much felt like my parenting was damaging my child mentally, and emotionally. Now it seems completley insane I'd ever feel that way, but back then it seemed like the only reasonable solution. I truly felt like a crappy mom. Realistically I knew I wasn't, but here's an excerpt from one of my journals: '' I don't know where to begin, there's something wrong with Brock. He was having another temper tantrum , so I put him in a 2 minute timeout and he started panicking. I mean I've had panic attacks and it sounded just like that but a thousand times worse. They are happening more frequently..and he has such a spaced out look on his face when it happens. I don't know who to talk to because because everyone says all toddlers throw tantrums, but my instinct is telling me its more..It's the most heartwrenching thing to witness, I guess time will tell.'' After Brock kept having these (what i thought were temper tantrums at time) I wrote about what it looks like, and how they play out for him. '' I noticed when certain things bother Brock, or a plan is changed, even being surrounded by too many people these tantrums begin. Although, I hate calling them a tantrum, it seems like something much deeper for him. He'll start by sucking his fingers and pacing back and forth from room to room. Then he'll start self soothing by rocking back and forth and his breathing will pick up. If he's completley inconsolable he'll rub his fingers against his palms, and the most heart wrenching, soul piercing cry & scream begins. His breathing will sound like he's hyperventilating, and usually will repeat the words '' I can't, don't make me, or it hurts''. You can't ask direct questions as they tend to anger him. You have to be calm and positive, and talk him down from a distance. He's so overstimulated it seems, any touch could have him turn's not intentional, as Brock is the least violent person.'' As Brock got older these meltdowns became worse. I think he was 4 when I wrote that. Brock isn't himself for days after one, it sucks the energy right out. . Now I know the signs , so I can help him calm down in five minutes, usually. They used to last 30 minutes. Brock's biggest triggers are routine changes, fingernails and haircut, teeth brushed, having tags on clothes, any fuzzy-wooly winter clothes. Over-crowded places, and different textured food or toys. And people who surprise him, like touching his hands or shoulders without him knowing. All of his triggers are painful to him. One time after clipping his nails, I asked him what it felt like, and he described it as a burning sharp pain. Almost stabbing. It takes two people to cut his fingernails and hair. I remember the first time I called my mom during a meltdown (before we knew) and said listen to this, he's not throwing a tantrum over a toy he sounds like he's hyperventilating. And to have someone else say yeah that really doesn't sound right..I've never felt as much relief as I did in that moment. It no longer mattered what anyone else thought or said..I finally had someone on my side.

Wednesday, November 12, 2014

Why I refuse to keep quiet

I get asked once in awhile, shouldn't you let your child decide who knows he has Autism? More often than not people whisper the word too, like it's something secretive and should only be spoken of in private. My answer is, and always will be a big resounding NO. I feel like if Brock having Autism is kept quiet around him and others he will feel that it is something to be ashamed of. Upon receiving a clinical diagnosis seven months ago, we were handed a huge stack of packets with a " Good luck. We used to work with Autism here but no longer do. Most specialists that do have a minimum of a year wait list." So if trained professionals didn't know a starting point for us, and couldn't offer sound advice, it's solely on my shoulders." Our experience and many others I've come to know who have children with ASD, proves that while the number of children who have Autism is on the rise ( 1 in 68) the knowledge and awarenes is not. If there's one thing I can do for Brock, I think being his voice is most important. I hope one day people won't skirt around Autism like it's shameful or embarrassing. But know that these children if given the chance like Brock has, can, do and will continue being just as important, productive members of our society like everyone else.

New Blog

So I want to use this blog to update family, and friends on Brock since most of my family lives out of state. It's hard to always get on the phone when our days are always so busy. Obviously anything private won't be on here. I want to use this as a way to spread awareness on Autism, since Brock is high functioning ASD. I know there is thousands of blogs out there on Autism, and I read a lot of different ones, but this is our story, and every story is different. Sometimes reading the day to day happenings can give people a better understanding on what having a child with autism is really like. Although, I'd like to add you'll never get a full picture unless you yourself, or child have Autism themselves. I'll try to write a new blog once a week. I'll post my first one today. Lindsay