You one day might wander away…

Last night I looked my blue eyed boy in the eyes and said to myself “it could be you. It could be you to wander off, no matter how locked down the house is. No matter how many eyes are watching you. No matter how tight I hold your hand. You one day might wander away.”
This past week the autism community lost 3 beautiful children. My heart is broken for their families and as a mom of a child on the spectrum I am now more worried of the safety of my child.
My son got his diagnosis last June. We live next to 2 ponds, a river that is down the road. My son loves water. He loves playing in it. He enjoys going swimming. My only thought is “how do I prevent this?”
I read the stories of Mikaela Lynch, Drew Howell and Owen Black. Their parents were minutes if not seconds behind them. The police were contacted right away. They looked and searched, but everything happened too quickly. If you do not have a child on the spectrum yourself then u most likely don’t know the statistics of children on the spectrum wandering or “eloping”. Half of all autistic children wander away at least once before the age 17. No matter how many locks we have on the door, it still happens. No matter the amount of eyes we have on our child, it still happens. No matter how tightly you hold their hand, it still happens.
When people like me in the autism community hear of these stories, we don’t ask “where were the parents?” “Why weren’t they watched better?” We already know. They were there. Trying their best to watch after their child. We know how scary it can be. The constant worry.
Unfortunately you can’t autism proof your life, no matter how hard you try. You can lock your doors and you can do everything in your power to protect them, but this happens, this happens time and time again. And here we are. Here we are understanding how easily this could of been one of ours. We are here extending our hands and opening our hearts because like myself, I think of my child. My blue eyed, big smile and light of my life son that is on the spectrum. He sees no danger, only adventure and that is the scariest thing I think about.

Mikaela Lynch, Drew Howell, Owen Black and any other child that lost their life to wandering. Rest in Peace
And to their families we are here. We are all here.

The Most Annoying Questions

We have all had the questions that were meant to be polite but they are only annoying because we hear them so much. Well here are the questions that we often get from people who have no idea…the “curious” questions.
(in no specific order)

1.) Why is he doing that?
Why is he doing what? Flapping, jumping, spinning in circles or any other weird motion with his body. It makes him feel good. Nuff said. Then I always have to explain why it makes him feel good. It’s just how he gets himself in check. It’s not that hard to understand!

2.) When are you having more children?
I hate this question. I’m sure parents of NT children hate this question too. I hate it because I then explain that I don’t want more kids right now, then the person that asked the question says, “well he wants a brother or sister.” I hate this stupid question and I feel it is nobody’s business. So how about this answer, mind your own business. I have enough on my plate. My son is autistic, that is like taking care of 2 children on a daily basis. Did I mention I hate this question?

3.) Do YOU think he will talk?
This is different from the “does he talk yet?” question. Mostly because they are asking for your honest opinion about your child. I think he will, my son is 3 so I still have plenty of faith that he will. Not to mention he is scripting TV shows and he knows his numbers and few other things, but really I don’t like to talk much about it. Because you then talk about how your child says this and that. I don’t care..I really don’t..

4.) Why isn’t he listening to me?
I hate when someone thinks my child is always ignoring them. He has too much going on at the time to pay attention to only you.

5.) Why does he like things that spin?
See question 1 for answer.

6.) Why don’t you try feeding him this…?
My son has sensory issues. He won’t eat that, he won’t try it. And Yes I have already tried.
The “you eat what I make you” doesn’t apply in this house.

7.) How does he have so much energy?
I’m sure his ADHD has something to do with that.

8.) Isn’t it past his bedtime?
Now with this one I know plenty of ASD parents have a set bed time for their ASD child. Awesome! Good for you! I applaud you, but with the Monster it seems that it is very far away from that. he goes to sleep when he is tired. Forcing him only makes it worse and we will eventually get to a bed time before a certain time, but we just can’t yet. And luckily you ASD parents understand.

So that is it! That is the most annoying curious questions that we as ASD parents get. Please feel free to share an annoying question you get asked a lot.

Skipping The Party

Have you ever been to a child’s birthday party? Party games, kids running and screaming, ice cream and a cake decorated with the most popular cartoon character. Lots of laughter and fun, unless you are a parent like me. I have written about not attending certain things before, weddings, birthday parties, cookouts, Holiday parties or any other event with friends or family. You won’t see us there and if we happen to stop by, don’t expect us to stay long.
One thing that keeps coming up, no matter where I seem to run is…”why didn’t you come to the party/get together.”
Many people think that just because my son has autism doesn’t mean I should skip these “important” events in time. I sometimes wish I could trade places with many of these people, you know give them a day with the Monster. See how they like dealing with the meltdown over something small and then put them into a position of having to attend one of these get together/party/events and see how fast they run.
It’s not that we don’t go out and do things, it’s not like we don’t go out to eat, to the mall, to our local Wal-Mart. It’s not like we don’t attend some events, but sometimes it is impossible. Mike have made an agreement to attend these things together. And if he has to work then if one of my sisters is free, then they will go with me.
So the big question is….”Why is it so hard to go out and go to certain places?” followed by “Who cares if he has a meltdown.” or the famous “I’m sure he will be fine, I will help with him.”
Well I worry all the time that he is going to break something here at our house, that is already toddler/autism proof. Imagine going to a whole new place, in a different environment. It’s hard enough watching a 2-year-old without autism. I don’t need added stress. Sensory overload adds onto having to watch him like a hawk. If we attend a birthday party and it’s too crowded in a house, sometimes sensory overload takes place. The smell of food that makes his stomach turn, the noise of other children running through the house screaming. The adults that crowd up to have conversations and half of them don’t even know or realize that the Monster is non-verbal. It becomes too much for him. Too much for his little brain to wrap around. Then start the sensory overload right into a full-blown meltdown. So he throws something and possibly breaks something or hits grandma in the head while she was just trying to enjoy her cake. So I care if he has a meltdown, especially when we are in a closed in area.
The “I’m sure he will be fine, I will help with him.” I don’t care how you help with him, it usually doesn’t help me anyways. I’m a mom of an autistic child, I don’t take my eyes off of him. I don’t sit down to eat a few bites of cake or enjoy a cheeseburger, I am following him throughout whatever room he chooses to go to next, I am right behind him..every. Single. Step. So you offering to help, doesn’t matter. Honestly, I find it hard to trust anyone other than myself. So close family members that are around him constantly are the only people I trust him with.
So why would I attend your party/event? Why would I want to put myself in this position by myself? I wouldn’t. I wouldn’t want to because I know what I would have to go through by myself. If I don’t have those extra hands, than I don’t have enough hands. I stopped attending things because it is safer for my son. You know, my child who comes first. It’s stressful when he has a meltdown in front of people. I get nervous, mostly because it is a lot to handle, especially when nothing I do is helping.

Don’t be hurt that we didn’t show up. It’s just more important for us not to go. It’s hard for a parent of an autistic child. Plus add ADHD, Sensory Processing Disorder and in some cases things like anxiety, epilepsy or special diets (so they can’t eat whatever food you have anyways). Plus a child that does not understand basic communication and has a speech delay (or no speech at all). It is hard to deal with in general. So putting that child in a situation where they are just supposed to “fit” in. Doesn’t work. It doesn’t work at all.
So no, I won’t be attending any birthday parties, get together, Ugly sweater party (Christmas), dinner events or anything really. Like I said I will only attend them with help from someone who I trust. Does this make me a bad person? No, I’m putting my child first. I’m putting his needs before anything else.
The only thing that makes me is an autism parent. And a good one.

Overlooking The Puzzle Piece

Earlier this week we took the Monster to the doctor. Afterwards we headed over to Wal-Mart to get his prescription filled. It literally took almost 30 minutes to fill his prescription, so during this time Mike, the Monster and myself all looked around at a few things. In March or so we are going to paint the Monsters room and he will no longer be sleeping in his crib, so I wanted to look at some paint samples. While I was picking some out and showing Mike and explaining how I went to do his room in ‘Cars’, Mike says, “let’s do blue, like Autism blue.” He then goes on to add, “lets put up puzzle pieces, let’s do his room in Autism blue and puzzle pieces.” I know some people might be like WTF? Even a lot of you autism parents are most likely saying, “What in the hell are these people thinking!?” And I got ya, I understand. We live and breathe autism a lot. We live with it in our house all the time. We can’t escape it unless we literally leave and never come back. We have no way of getting away from it. So why add to it? Why see the puzzle piece every time we walk into our sons room?
So let me explain why we are so “pro autism” and why we WANT to see it everyday.
The puzzle piece was created in 1963 by the National Autistic Society. They explain the puzzle piece as this, “that the symbol of the Society should be the puzzle as this did not look like any other commercial or charitable one as far as they could discover. The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’.” I bet a good chunk of readers didn’t know that, not even a good chunk of the autism readers. It’s okay….I didn’t know when it was created or why it was created or what it meant.
Before autism effected us, I am sure we seen it. I am positive we seen the puzzle piece other places. I am sure I walked through the mall and a mom had a pin on her diaper bag, I have most likely seen a service dog with a little stick that had the puzzle piece on it. I’m sure a dad has worn some type of shirt that had the puzzle piece on it while standing in front of me at Wal-Mart. I am sure that I have seen it many times and never looked at it and thought, “that puzzle piece means something. That puzzle piece means more than just a piece to some puzzle. The puzzle piece stands for something other than what it is meant for and what is created for.” Did any of you ever think that? Do some of my readers not effected with autism in their daily lives look at it and smile? No most likely not. That’s okay, I just admitted that the autism puzzle piece didn’t mean a thing to me before. I just admitted that I overlooked it many times, which is normal. I’m sure many of us overlook it and some of us still do. I never thought until now what that puzzle piece might mean to someone.
So here is what it means to me.
It means that I am stronger than I ever thought. I am weaker than I ever thought. It reminds me to have patience. It reminds me to look at my child differently, but to never forget who he is. It means that I spent long nights and early mornings watching cartoons. It reminds me that it is only 1 of many pieces in life. To me it means Autism in general is still a puzzle and we all have so much more to learn. It is my reminder to always stand beside my child. It is my reminder to keep learning from my child. It is my reminder to be an advocate, a voice and a different type of mother to my child. It is something more than just some puzzle piece. It is my life, my courage and my rock. It is my support to lean on. It is my glue that puts things back together when things fall apart. It is the piece that holds my family together. It is everything in my world.
So, I have no problem waking up everyday and seeing it on the wall of my sons room. I have no problem going to bed every night seeing it in my sons room. It’s my reminder, to have patience, to be strong, to keep going. It’s my reminder to not just be a mom, but be a best friend, advocate, rock, teacher and voice for my son. It is something that will remind me everyday to be thankful and to appreciate the smallest things. And that is why I have no problem seeing it everyday.
I never thought something that I overlooked many times could mean so much to me. Could be the things to hold me together in life, but it is. So, next time you see it, don’t forget what it might mean to that person.

At The End of My Rope

I’m feeling at the end of my rope with things and I don’t know what to do. I’m losing my mind, along with my temper. I’m starting to feel a little lost in this whole autism world. When usually I was a step ahead of everything. I’m not having to google more stuff, when I thought I had googled everything.
When does it stop? When will I finally get over it? Coping with the diagnosis I thought was easy, but now it’s not. In 2 months he will be 3 years old and I keep thinking the older he gets, the less chances he has at things. Things like talking and doing the things that we want him to. I’m being selfish, I feel selfish for thinking this.
Yesterday, spending 5 minutes at ‘Jump It’ was what sent me over on this. He didn’t want to play and I couldn’t help but think that my heart shattered once again. Another thing that he doesn’t want to do. Another thing that he doesn’t enjoy. Things are starting to get less and less on what he enjoys. Or what he finds interesting and he is only 2. What is it actually going to be like when he is 10?
I keep going back to when we got the official diagnosis. I wasn’t emotional at all, I guess because I knew he was already autistic. I knew he was on the spectrum somewhere. I guess the reason why I am having a hard time right now is because I don’t know what is next. I don’t know where to go from here. He is starting school after he turns 3, but then what? Where do we look for services. What happens when school is out for the summer? Where do we find resources now? Is now the time to look into a service dog? Should we look for ABA therapy now? How do we get through Christmas break? What about spring break and fall break? What does the list of what to do end? Being at the end of the rope sucks.
Autism sucks. Having your heart broke because your child doesn’t enjoy the things they you once enjoyed when you were a kid. Watching them struggle to do a simple task is hard. Speaking to them and them having no clue or idea what is going on, so then they have a meltdown. A meltdown that you see too often and then you start to lose it. You lose your mind. You are backed into a corner with things and you have no idea where to go or what to do. And then you wish it. You wish for the “normal”. Admit it. You have wished it too. You wished that your child was just like any other child at one point since the diagnosis. It doesn’t make you a bad parent, it makes you a human being.
Then you go all the way back to the beginning. You blame yourself, “If only I did this…” “If only I didn’t do this…” “I should have listened to my doctor better…” “I should have spaced out his shots more….” “I….I should have….” Everything comes back to you. I blamed myself, i sometimes still do. I’m human right? And then I ask myself, “Why me?” “Why us?”
This takes me back to Christmas and how my son doesn’t understand or “get” any part of the holiday. (Christmas Traditions) and how I was heartbroken. I really wish I didn’t suggest going yesterday, maybe I wouldn’t be feeling this way today…

The Truth About “I’m Sorry” and A few Other Things That Go Along With Autism.

“I’m sorry.” The words muttered by family, friends, coworkers and even the stranger at the grocery store. Words that I have already heard over and over. The “I’m sorry” is their only sympathy that we hear, that we receive. “I’m sorry” is nothing more than their “I don’t know what else to say.” meaning. Very rarely does it mean anything more than that. I have heard it over and over. And now it’s drilled into my head. Every time you tell a person about the Autism diagnosis. No matter how old your child is, whether he is 2 or 20 years of age. You have already heard the “I’m sorry” enough times to know what else will most likely come after it, but it always starts the same. Every. Single. Time. You pour your heart out to some and their first response is still “I’m sorry” as if your child has just passed away. As if you didn’t already know that the future you had for your child is completely different.
You think of new ways to respond. They say “I’m sorry” and your response starts to get that angry tickle in your throat. “For what?” or “I’m not” I have used both of those already. The thing is they don’t even know what they are actually sorry for most of the time. Honestly, what could you possibly be sorry for? Your sorry that my family has a different type of battle than yours and that this battle isn’t the “typical”, “normal” family type of battle? Your sorry because he might not ever get a job, live on his own or even talk? Lets be honest. Honesty the thing that isn’t getting you nowhere, but it is getting me somewhere. Honesty is something that you lack, especially in the most truthful of situations like this.
So lets be honest, you keep the “sorry” part. Why? Because it is only words. I have heard many times how “sorry” someone is. They then offer the “if you need anything let me know” part. But they don’t follow through. Many times these types of people who know you, who have been “friends” with you for many years or the “family” who you have been there for has used words to say how “sorry” they are, but honestly they are glad. They are glad that it isn’t them. Why does it take many of us to figure this part out?…if we ever figure it out. It takes us awhile because we still want to see that good in people. You know the good in people that we don’t see very often. Why? Because so many people judge our child. They blame us, they blame our parenting, our pregnancy, our genes. They blame television, food, video games and anything that is possible to place blame upon. And the blame is always somehow our fault. At least to a good chunk of the outside world. We get the weird and dirty looks when our child goes into a meltdown frenzy in public and yet we still want to see the good in people. We want our best friend that said, “I’m sorry” to actually be that person they claimed to be. Even that stranger that looked at you when you were trying to calm your child down and you said, “he’s autistic”. They still said, “Oh, I’m sorry” but yet gave you this look like…well sucks to be you and that it is still your fault..you know the autism part is your fault. Bringing him in public when he can’t “control” himself. Doing the wrong things with him. It is somehow your fault.
You want to know what else is the truth? The invites to things. I have gotten invited to many things, but yet I can’t go to these things a lot of times. I can’t take the Monster to a Birthday party without Mike, it’s too hard. And I can’t take him to other things that I would like to do. So I don’t go. I don’t reschedule and soon I stop getting the invite to hang out even. Which yeah, I will take some of the blame of it, but not all the blame. Why doesn’t one of these people say, “hey, I will help you out that way we can go out lunch” because they are scared and “sorry”. So when you can’t make it to one of these events they instead say, “well we will have to get together some other time” which is they are “too busy” to work with you on your schedule, in other words your childs schedule. They invite you over, even though they know your child can’t handle going to a place that isn’t “autism proof” (it’s like child proofed, but 10 times harder to get to dangerous things).
Truth and honesty right there folks.
But here is the deep down truth about all the “sorry” and invites. It sucks. It sucks because again with the honesty here, you want to go. Sometimes you don’t get invited to things that you used to because of all this. Friends stop inviting you out, family stops inviting you to the birthday parties. And that sad part is, no matter how many times you say to yourself “I don’t care”…..you actually do care if you are invited to these things. You do care if people never really mean the “I’m sorry, let me know if you need anything” part. You care about it all. You care enough that you get that tickle in your throat to have some sort of comeback when they say the words “I’m sorry”. As if you feel the need to defend the autism in some sort of way. You care enough to tell yourself that you don’t care. And it is because you are already tired of hearing the “I’m sorry” part, because you have already heard it over and over again and you will continue to hear it over and over again. People forget the honesty part when it comes to the truth. People forget how easy life is for them sometimes. They forget about you even, because the autism. And in our world, when we say “I’m sorry” we remember what it actually means. The true meaning of being sorry about things. Our children have made us truthful and honest. That is a good part of autism, we learn to be truthful and honest.

Don’t Stereotype Autism

Dear person reading this. It seems with recent events in the news has put a mistaken stereotype on autism. So I am going to clear things up with you because I am worried you may be stereotyping my perfect little child.

With recent events in the news I am worried and scared. I now have another fear, I have a fear that my child will be stereotyped. I fear that autism is now looked at in a bad way and only in a bad way. I fear that the words violent, tantrums, personality disorder, behavioral issues, combative, mental, anxiety, issues, will now be words to describe autism. I worry that my child will be stereotyped into a category because “they” said so. I posted about “they” and how “they” say things you can read that (here). I am worried that my child will now be looked at as nothing more than a “mental case” just because the news are reporting what they feel is the right things to say. And that right thing is placing some into a category and stereotyping.
When describing the shooter this is what I hear, “the shooter wore all BLACK. The shooter was autistic. The shooter Lanza had some form of autism. The shooter was autistic and suffered from a personality disorder. Anxiety issues. Autistic loner’s explosion. He had OCD tendencies. Lanza was ‘odd’. He was just a weird kid. He had issues. Socially awkward. Needy. Somewhat autistic. Rambunctious kid.”
These were the words used to describe him. So when you put these words together and you put AUTISM on the headline people will only put these things with autism, therefore putting autism into a mental disorder and now somehow my son can be capable of this just because he is autistic. So here it goes….you sterotyped him. You put autism at the headline and now you have something to go off of. You put him into the autism box and dropped him off for us (the parents and others that experience autism first hand) to now clean up the mess that you made. You decided it was enough for people to have their answer on why he would do this and autism was it. Autism was the easy way out. Well, autism is not like that. Not in that way. Yes, my son is a little different, OCD and he is autistic, but he is not a hurtful person. He has sensory issues (like everyone else in the autism world) but that does not mean he will grow up and kill because of his sensory overload. His autism does not mean he will grow up and be violent. His autism does not mean he will grow up and do something dangerous. His autism does not mean he will shoot or harm anyone. His autism is nothing more than his autism. Neurotypical people commit crimes all the time, but since autism was on the headline than it is this mans reason? No, it should never be a reason. This is putting autism in a bad light and it is in a bad because you put it on your headline.
My son has autism. And his autism does not make him a bad child and will not make him to be a bad adult. My son is loving, caring and spoiled. He enjoys being kissed and hugged. He loves to be loved on and he loves to love back. He likes to play with people and other children. My son sometimes self harms himself (banging his head on the wall) and sometimes he does hit, but he is not a bad child. He is social and enjoys his therapy time. He is an autistic child, an autistic child with sensory issues and lacks communication skills. My child is autistic, he is not a stereotype, he is not rainman. He is a loving, cute, wonderful, joy of a child. So please do not blame autism, please do not stereotype every autistic human being and please do not think my child is anything less than special. That is what autism is!

http://autisticadvocacy.org/2012/12/asan-statement-on-media-reports-regarding-newton-ct-shooting/ Autistic Advocacy Statement. Please read this also!