I’m writing a quick blog post on my phone, so sorry for the grammar mistakes.
It’s been awhile since I’ve written a blog post. I feel like I’ve been busy, but in reality I’ve been cooped up most of the winter inside. We have had lots of snow and we’ve been snowed in multiple times during the winter. Before Christmas the Monster got sick a few times. A bad cold/virus/flu type thing would go away with the help from antibiotics but come right back a week or so later. I even joined a book club recently, we meet once a month and it’s nice to get out of the house without the monster attached to my hip and my husband on the other side of me.
Anyways, the point is I haven’t really been busy. I’ve just been quieter around these parts lately. I guess the days of autism blur together sometimes and my emotions have taken a backseat on writing. I’ve been stressed and i just decided not to write or even post on my Facebook page lately. I figured I would give you all an update though and maybe get back into writing my blog.
The Monster is doing okay. Around November(ish) he started having some behavior problems. It gradually started getting worse and worse. Last month I decided that I should contact his developmental pediatrician. He’s 2 hours away so we can’t just visit whenever, but he’s a good doctor and I can call the hospital and he calls me back that day or the next. I spoke with him told him our concerns with the Monster. How the meltdowns are severe and on some days I literally put him in the car and drive for hours just to keep him calm. His head banging had gotten so bad that we now have multiple holes in the walls that need fixed. I had no idea what I was doing or what to do anymore, he never seemed happy anymore and I missed him being happy. Obviously the Monster has a lot of frustration. He knows very few words and understanding of them, so his communication is like a 0. He would lose focus so easily and the get frustrated and then a meltdown would start very easily. The Monster is very hyper active, so after we talked his dr decided Ritalin would do the trick. To calm his ADHD and hopefully help with his meltdowns.
So how’s he doing with it? Good. Meltdowns aren’t as severe, he seems to focus better and he seems a lot happier. Plus his head banging has slowed down quit a bit. Is medicine best for our child? I think so.
Don’t waste your time on commenting on diets, no point on it. Here’s why.
Diets-they don’t work for the Monster. He ONLY eats certain and very few foods. So gluten free won’t work, it just won’t. I’m sure many Autism parents will understand that, but some of you might be pointing the finger. Well don’t bother. I point my finger enough at myself on this issue. I hate that my son likes McDonald’s French fries and onion rings from Burger King. He loves pizza too, but I wish he would eat a salad or some veggies with it. Oh well though. He eats what he eats, we try and sneak food in here and there sometimes, but it doesn’t last long. So diets are not an option. Oh well.
I know that their is no magic pill to make the autism go away. To “cure” him it’s not possible. He still has his bad days, he still has some bad meltdowns, he still loses focus, but if it helps even a little then why be against it? You shouldn’t. And now I’m feeling more comfortable to get back to blogging and sharing. I feel a little more relaxed about everything now too.
So that’s where we have been. We’ve been lost in meltdowns and head banging, but we are slowing coming back out in the blogging world.
Archive for the ‘Uncategorized’ Category
I’m writing a quick blog post on my phone, so sorry for the grammar mistakes.
We have all seen the memes. Many of our Facebook friends post “share” them or “like” them and it shows up in your news feed. And every time it does I just want to ask, “what is wrong with you?”
Why would someone post this? Do they not believe that things like Autism, Sensory Processing Disorder, ADHD, etc. are real? Do people really think that none of those things exist? Maybe it is our imagination. Developmental disorders, behavioral issues, they aren’t real…why? because “back in my day it was bad parenting” and “we didn’t have these ‘illnesses’ like they do now.”
See “back in your day” autism was there. And it was blamed on the mom. Because the child’s mother didn’t love her child enough and that is why the child was autistic. Things started to change in the 1980’s and early 1990’s. I’m not going to explain how many children ended up in a “home” and how shock therapy was big in the 60’s and 70’s. This is just my way of saying, it was around, it has always been around. People just didn’t talk about it enough. Parents gave up on their children too easily. Doctors blamed mothers because they weren’t “doing enough” to prevent it, they didn’t love their child enough. Doctors often told parents to just give up now. And “back in your day” anyone who wasn’t “normal” was called the “r” word. Their disorder was never used.
Here is my letter to you..
If my son’s autism doesn’t exist..if his sensory processing disorder doesn’t exist..if his ADHD doesn’t exist…then neither does down syndrome. Tourette’s syndrome isn’t real either. Alzheimer’s is imaginary also
I mean if my son can’t control how his brain works and he is just being a brat then what really is the difference? Why do any of these things exist? Any kind of illness, disease, disorder, why have it? Because really “back in the day” it wasn’t there.
My son can’t control if and when he is going to have a meltdown (yes, a meltdown not a tantrum) because sometimes the freezers at the store is too loud for him. Because sometimes his clothes just don’t fit right that day. Because sometimes he really wants to tell me something and he can’t, so he gets upset and frustrated that he can’t express his needs and wants to me, like your kid can.
So please tell me again that about how it was “back in your day”.
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.
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. 🙂
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.
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.
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…