Posted in autism

Division

So today my post may ruffle some feathers but i’m going to speak my mind anyway. If you are someone who disagrees or is offended by my opinion then I am sorry, we are all entitled to our own opinion and I am speaking mine. I have known Brody had autism since he was very young, about 18 months old although he was not officially diagnosed until May of this year. I had little to no experience with autism so this was a whole new world I plunged into head first, I instantly felt overwhelmed. Taking in so much information at one time made it hard to sort out my own thoughts and to see where Brody fit in this community.

Right off the bat I noticed a trend that I have touched on somewhat in some of my previous posts and its something that I dont want to be associated with.


^meme that sparked this topic for me

Not an autism mom…I’m a mom. Not an autism mom…I’m a mom.   

There seems to be sort of division being created between mothers and “Autism moms” and I cant seem to wrap my head around why. I have read blog posts, Facebook statuses, instagram captions and viewed pages after pages online that have memes or posts of parents putting themselves above other parents. While my child has a disability, it is not a contest or something that should be made to feel like I have it so much harder then others. At the end of these posts I always see “Only autism parents will understand” and I cant stand behind it. There is a wide range of disabilities in the world, parents and families with challenges, individuals coping with loss or health problems, the list goes on. I am all for being a community, having reminders on my newsfeed that I am not alone in having a child with autism and knowing some of the things I face are shared with people all over the world. While having a child with autism is a challenge at times and forces me to go about our day differently then a “typical” kid may, I realize that others are also doing the same. The quote that says ” Be kind. For everyone you meet is fighting a battle you know nothing about” applies here. I try to apply it to others and I hope others look at us and realize the same thing. While having Brody as my son presents its challenges, he is healthy and happy kid and I am a protective and loving parent who wants nothing but the best for my son. I think all parents feel the same in this aspect and I think this is what should be focused more on. I would love to have Brody feel included with the other children his age, go to birthday parties, play at the playground and make friends like a 3 year old should be. I also don’t know many people who have kids with disabilities but I still am friends with so many parents. I think the problem is that posts where “autism parents” put themselves on a different level then other parents, it makes it uncomfortable for parents of “typical” kids to know how to interact with kids like Brody and parents like me. I see those posts putting us on a different level and in the same breath I see posts begging for inclusion and acceptance from those in the autism community and this is where it must be confusing. You cant ask for acceptance and say you’re just like everyone else then post a meme stating something and follow it up with “only autism parents understand”. I hope that we can start really looking at what we post and the impression it gives off to those reading so we can continue to be accepted and smooth the interactions and just appreciate each others company and the uniqueness we bring to the table.


^Another example of what sparked this for me, all parents for the most part take bullying seriously. 


^ I think that with children’s lives something wonderful can happen every day as well. Kids with autism are no different, just maybe in what may be considered wonderful (different milestones etc) 

This leads me into my next topic. August and September is the time for school to kick off and its a very exciting time for parents and kids (hopefully) and can be extremely chaotic and sometimes stressful. I know there are a lot of things to check of the list for supplies, making sure you’re aware of classes your child will be attending, teachers who will be instructing the classes and the after school activities your kid will be enrolled in. In this whirlwind that is called back to school, please take the time to sit down and have a talk with your child about something important that needs to be taught to our youth : bullying and acceptance. I previously posted about a 13 year old who committed suicide because he was bullied so severely and I hope that stories like this lessen because any life lost because of bullying is too many. I am also aware that like myself, everyone may not have had many interactions with those who have a disability growing up.This can make kids unaware of some of the things that may come with a disability such as different tendencies in behaviors, physical appearance and speech issues or even in some cases like Brody, being non-verbal. Take a moment and have a talk with your child about what that may look like along with how to treat those who may need some extra understanding and kindness.

I would like if we all entered into the new school year with a feeling of one community, not a divided one. Kids are a blessing and deserve to feel welcomed no matter what, they are our future. I also would like to welcome anyone who had any questions to ask parents like myself if you’re unsure how to approach a topic like this, anything you may be unsure about or just what exactly the diagnosis is. I am sure that I can speak for most parents of kids with disabilities that I would rather answer questions then be treated differently or avoided because it is uncomfortable. I am learning every day I have Brody in my life and I would love to help others learn as well, I am hoping my blog is one way to spread the word and make things like autism a more comfortable topic to discuss. I am excited to start a new school year, see what Brody and his classmates take on and to have an excellent teacher to encourage these special kids. I am enjoying all the back to school photos and I love seeing how much love is behind all the posts, it is such an exciting and scary time for parents to see you child growing and becoming more independent. Its just so encouraging to see the positivity being sent out in the world and I hope it carries through the year and doesn’t die off because our children feed off of that energy.

I’d like to end on a bragging note about Brody, he has made so much progress and really shown how much information he has retained lately and it is so awesome.

“(TD?tyuhjkoopyttttttgh
jbjkbhlkcjnkalshdlkhsdkjsahdkjsahdksajdklsajmcnbxzjhvc

dn dwe fejwkf3

Just got blog bombed, Brody had something to say so that is what he wrote! haha. Wonder what he was trying to say.

Anyway, Brody had his Paw Patrol toys lined up so I started counting, 1,2,3,4,5! I go to do it again and I go 1, Brody goes 2,3 then sounds attempting to be 4 &5. He clearly said two and three though. I had no idea that he knew to count like that. He even made me point my finger along with each dog. That was really neat and I wish I could have caught it on camera but still happy I got to see that. Brodys drawing has also improved so much lately, It amazes me to see his little drawings transform. Below is the progression from Spring until now. I hope you enjoy his works of art like I do. Have a great night everyone and enjoy this time with your children before the break neck pace of the school year begins.




 

 

 

Posted in Uncategorized

Always remember…

I don’t like not knowing what’s ahead, how things are going to go and having questions that can’t be answered. Sometimes in life I just get a sense of urgency for  change or just like wanting something new to get some energy and liveliness back. Life is exhausting in many aspects and can be very difficult. Tack onto that the the exhaustion that comes from tirelessly wondering what the future holds for your child, how he will end up, how he is doing right now since he doesn’t talk and countless other things. It consumes me sometimes, typically at night like it is right now. It comes over me in waves, sometimes I choose to ignore it because truly drains me. I could stay up forever with millions of things running through my mind. 

Parenting seems like a partly cloudy day, sun breaks through and everything’s good but sometimes those clouds just stick around long enough to put a damper on the day. I know all parents can share this feeling with me and I get comfort knowing that that sun will shine through soon. My mom always centers me and reminds me to tell myself things throughout the day to get me through and in the right mindset. It works, I have to stop and have little pep talks to myself as crazy as it sounds. If no ones ever taught you this lesson, take her advice and try it out next time. Im writing this blog post as a way to remind myself of this and to work through days like today. I’m thankful for the air in my lungs and my incredible son. I’m fortunate that I get to open my eyes in the morning and take on a new day and see Brody growing and progressing, no matter how tiny the steps. I know I don’t have all the answers I want and that’s ok because I never will. 

Tough times, not a tough life. If you’re like me and laying in bed, reading this and having your own internal battle just remember this. You’re not alone. Now I’m going to kiss my sweet baby on the forehead and try to give my mind and body some well deserved rest. I hope you all can do the same. 

Posted in autism

Call to action. 

“” 💔
Hey everyone. I know every blog post I feel the need to apologize for posting sporadically but I think im past that now. I’m so happy you seem to be enjoying my posts and to keep them real and as honest as possible I am writing when I feel inspired. I started a new job this week and have been so exhausted every day. A few nights ago I plopped down in my recliner after my shift was done at 8:30pm.  The third story in and I read the headline, 13 year old commits suicide because of bullying. I found myself with a lump in my throat and tears in my eyes. Another sweet soul with so much potential and life, gone because of something so preventable. 💔

By now you should pretty much have a feel for how I am and my feelings on certain things if you’ve been reading along. If you actually know me then you definitely get it. I’m a bleeding heart with little filter on my mouth. I’m not afraid to stand up for what’s right and I’ll vocalize my feelings when I see something I feel as wrong. I befriend those who may need someone, I enjoy the company of people with a wide range of personalities. I am aware I am considered odd and don’t fit in with a few different groups of people. I know I’m not everyone’s cup of tea, that I’m flawed and am still working on myself and may lose people in the process. I’ve had a hard time accepting this and honestly I still wish everyone liked me and that I fit in like I see others do. Every day older I get I accept it a little more and it becomes more ok with me. Do I like it? No. Is that how it goes with everyone? Yes. This topic is a deep one that strikes a cord in me, here comes a lengthy but worthy of your time post. 


At five years old I had long, blonde hair, wore colorful and crazy outfits and had round, rainbow glasses. By fourth grade I had a full mouth of braces, had elastics and headgear. I chose to wear them all day long rather then just at night since it would cut a year off my time with them. I had those painful, aeful glasses for five years. Five. Years. By freshman year my braces and glasses were gone and I started to come into my own. I made more friends in highschool, found my passion for art and golf, had a couple boyfriends and learned a lot of life lessons. I had a few friends who had stuck with me through it all and for that I will always be thankful. At the end of the day though it was my family who got me through it. My sisters were my best friends and my parents were the rock I needed. They loved me through it all, coached me along the way and lifted me up when kids had knocked me down. I was never truly bullied like I hear about now but let me tell you, some comments and remarks still stick with my today. I feel that insecurity still carry with me even now and I have to tell my 13 year old self to sit down because I’m an adult and I can be myself and not have to worry about others opinions and judgements. To this day when I go back to Maine to visit, I’m remembered as the girl with glasses and headgear. I’ve even had a few ask me if I was in a wheelchair as a kid because for some reason they thought I was. I laugh and brush it off, it doesn’t phase me as much now but I’m thankful I was able to process my feelings in a proper way when I was a kid so I could come out the other side ok. It made me have thicker skin, taught me to laugh at myself when appropriate and to also sympathize with those going through similar things as me. It also taught me to have a voice, to be an advocate for others and to brush off those who feel the need to tear others down to make themselves feel better. 


I’ve had several times where this lesson has come into play since I graduated from school but nothing was as trying as having it happen to my own son. My sweet son, struggling with communicating his feelings, stressed from bouncing from place to place and with only one parent in his life at the time. I’ve posted before about my fitness journey but by the end I was so burned out. The tipping over point that led me to stop going to the gym was Brody being bullied. There is a daycare at the gym where I would drop Brody off while working out. Brody is non verbal and at this point he had not started at the school he attends for kids with special needs. This was also before his diet change, he was struggling so hard with aggression issues and was having tantrums and anger issues regularly. It was difficult for me to leave him because I knew he could be difficult to understand and care for if you didn’t know him well enough. One day I went to drop Brody off and a 7 year old kid ran up to Brody and I and yelled “Brody, don’t come in here. No one likes you”. I’m already tearing up as I type this because to this day it has to be my most painful parenting moment. I was sick to my stomach while running on the treadmill and after fifteen minutes I jumped off and scooped Brody out of there. A few times when I had picked him up he had been separated in the baby area by himself, away from all the other kids. Other times he would be sitting alone in the high chair table or crying and wandering around. I took a few days off and forced myself to get back. I go in, open the gate and here comes the same kid. “Are you leaving Brody here? Nobody like him. He’s mean”. There goes my heart, shattering in a million pieces. 


There are so many more things were said to Brody and I, I would say about six instances I clearly remember where this happened. I addressed it with a manager who promised it would be taken care of, he would follow up the next day and it wouldn’t happen again. My issue was the workers watched this happening and did nothing. Just watched and dismissed it. Anyway, I waited the next day for follow up and nothing came. I took a break from the gym for a month, how could I go back? I ran outside, did home workouts but finally went back after some time. A week into returning and the same thing started happening again. One day I looked at the daycare worker and couldn’t control my facial expressions. It was a “hello!” Face with my hands thrown up in the air. The worker said “******, that’s not nice” then tells me to have a good workout. I couldn’t leave my child there, took Brody and left. I sat in the parking lot, cried so hard I couldn’t see and called my dad. The next day I went to the gym and asked to speak with the manager in charge of the whole gym. I spoke with her, explained everything and she seemed understanding and supportive. She had me work out while she sat in on the classroom to observe. A half hour into my workout I was pulled out of the gym by a daycare worker saying my son hit someone. I was met by the manager and so began the most most appalling conversation in my adult life. 

Sometimes when I get upset it’s like my mind is in a fog, I’m too mad to vocalize what is going on in my head. This is how I felt listening to the manager, telling me it was my son that was the bully. How I need to be working out while I can get a sitter for him or choosing to go to another location since this one was not a good fit for him. I tried to defend my son, explain what would help and why he does the things he does. I realized it was pointless, this woman was close minded, that my son was a thorn in her side and I we left it would be an easy solve to the problem. She told me if I wanted to stay there and workout they could just come get me when he was “being a bully”. I should have asked if the same thing was applied to other kids who had hit or who said cruel things but I was too stunned at what I was being told. I realize my child is not perfect but I know him well enough to know that typically his anger stemmed from him trying to communicate and not being listened to or respected. That situation really taught me so many things and set a fire in me to try to make a difference in any way possible. I vowed this would never happen to my child again and I stick with it now. Disability or not, adults or kids, this behavior from the manager AND child is unacceptable. 


There is no excuse for bullying. None. Kids are a direct reflection of their upbringing and parenting for the most part. As an adult you have a choice, sit by the wayside and allow behavior this to continue or to make a change. We are raising the next generation of kids, by deciding to have children you’ve agreed to shape a humans life and to be a role model for them. It’s not easy and no one is saying that, there are times where you may feel uncomfortable, disliked and afraid to do what’s right but it’s your responsibility. If you don’t do your part, the bullying and cruelty will continue, more lives will be effected and lost and it could be you or your family suffering one day. You just never know. This situation with Brody was one of the reasons I started this blog and my heart is happy knowing the impact is has had. While my reach is small, it can be a ripple effect that may make a difference some day. Please don’t dismiss problems that arise, be an advocate and backbone for those who need it. In the note the 13 years old boy left before killing himself he said one teacher helped him but it was not enough, no one else helped him. Imagine if others had taken it more seriously, that poor boy would still be here. At 13 his life was just beginning, he could have been the one to cure cancer or be our next president. He was someone’s kid, sibling and friend. He could have grown up to be an amazing parent, shaping the generation after his on how to be a good parent. Now he’s gone from this world and all because his little voice wasn’t heard. I can tell you from experience that a short time of being uncomfortable when confronting a situation of bullying or cruelty is worth it in the end. Do your part, it matters. So ill conclude with asking you all to join me in sending love to the loved ones who having aching hearts because of this boys absence and hoping he rests in peace. I also hope that what comes out of his death is a lesson to those who pushed him to this point, those who allowed it to happen and those who needed to see be impact words have. Thank you for reading this and sticking through something that means a lot to me. 💕

Posted in autism

Simplicity. 

I have so many things in my life that are bouncing around in my head lately. Today I stress cleaned, somehow managed to not only do all my overdue loads of laundry but also clesn the actual laundry room. I even swept and mopped. I have never claimed to be an expert homemaker and cleaning is not my strong suit but it is obviously a necessary thing. 

I left my job in May once we got Brodys official diagnosis of autism. There was a lot of transitional things happening around then and work was conflicting with my families needs which I swore would never happen. I enjoy working, I throw myself into it and really take pride in what I do. I give major props to stay at home parents because it is no joke. I swear I’m more tired now then I was while working which is crazy to me because at the time while working 40 hours a week I didn’t think that was possible. Finding a job that meets my needs and Brodys while also making sense budget wise (childcare is not cheap) has been so stressful for me but I know it’s time to go back. I’ve been missing having a career and have been excited for a blank slate, being able to apply for any job I’d like. The job market is really rough up here and factoring in Brodys needs just seems completely overwhelming and defeating.  At the end of the day to stay above water I need to get back into it so my search has been going all day, every day lately. 

I picked Brody up at school today, gave him his milk and made him a fresh batch of buttery popcorn which is his favorite. He took off coloring and bouncing around while I was in the kitchen, switching between washing counters and browsing job sites, constantly refreshing and hoping for a new posting to come up. I heard Brody frantically running between the dining room and living room, taking trips with handfuls of crayons and peppa pig toys. Popcorn bowl and milk came next, trails of kernels being left behind as he manically organized his new “office” in the living room. It’s quite a sight. 


In runs Brody, yanks my hand hard, keeps looking back at me and drags me in the living room. He pulls my hand all the way to the couch and pushes me down to sit. He crawls up on my lap and sits there for a few and then he was off again, eating popcorn and coloring. He kept circling back to me, tapping my leg, crawling on my lap and just engaging with me. I think he knew I needed to snap out of things for a bit after a long day. He reminded me that no matter the struggles I’m facing and frustration with the job search I have the most important job of all, to be a mom. I’m succeeding in that and need to remeber to be mentally present, not just physically present with him. It is so sweet to sit and watch him enjoying such simple things like a bowl of popcorn, a box of crayons and paper from the dollar store and my company as much as he is. I’m sitting in my recliner, watching him draw the sweetest little people, thankful to have him in my life. He may not understand what his little gestures and his sweet heart mean to me and how he is changing me every day but it’s amazing. 

Posted in Believing in Brody

Change is the name of the game. 

Being 27 years old you’d think I would be ok and somewhat comfortable with change. Change is one of the hardest things for me, still isn’t easier although I have accepted it’s inevidable. Autism forces you to deal with change every day and I see it is a forced life lesson but it’s something I’ve been needing to learn. I like a plan, what I’m in for and how things will go but autism swatted that away before I could blink. I have learned to roll with things now, to go with the flow and not panic. I’ve learned to adapt on a regular basis, hence the blog name, Adapting to Autism. 

Today Brody and I took a trip to Syracuse to the zoo there, about an hour away. Usually trips like this I don’t do alone because it can be overwhelming and I get flustered easily. Today, I didn’t really have an option so I sucked it up and just went with positivity and excitement to set the tone of the trip. I’m thankful that he slept the whole way down and I got to roll down the window and enjoy the nice weather with some music on. As soon as I parked that calm all came to a hault like the car… Someone didn’t nap long enough. I packed up the stroller and started in, turned to the first exhibit of monkeys and I was already sweating. A lot of the exhibits are inside, narrow halls and lots of glass and cave looking enclosures. Brody instantly had his hands over his ears when I walked under the “rock” entry way and started mani king, sliding up and out of his stroller and almost toppled the thing over. I could see and hear the sheer panic in his face, he was flailing and turning his head side to side running away from me. 


I panicked and ran outside with him, I saw a water fountain and was so relieved because water is his favorite. Not today. He did the same thing and was screaming and crying with wide, scared eyes. I’m already an overthinker and this specific scenario always sends me into overdrive. I was trying to think of anyway to relieve it, candy, a game on my phone, milk, his blues clues doll, singing, just anything at this point. All of that failed, I ended up jogging away to a quitter place that was going down a path and he took his hands down, although still annoyed but not having a melt down. There was a group of three adults and a kid in front of us, taking up the whole walkway so I couldn’t pass. I noticed the lady who appeared to be the grandmother in the group keep looking back and giving Brody “the look”, I’m sure you can imagine the one I mean. I’ve learned that I can’t say things to everyone who gives a dirty look to Brody, there’s not enough time in the day and I don’t want to ruin our time. That’s why I write this blog. Although that lady won’t see this post about what’s behind some of Brodys times of distress, maybe someone will experience the same thing and carry about without giving dirty looks. My mom told me to let negativity roll of my back like a duck so that’s what I did… Onward I went. 


We looked at elephants, my favorite. I made him pose with them in the stroller even though he didn’t care a thing about them. As we took off to the next exhibit, to my horror was a mister ahead. This mister sprays the WHOLE ENTIRE WALKWAY! While this is a great idea, for a kid with sensory issues it our worst nightmare. I had to run through and even at that he was back to wailing and panicking, gasping for air like he drowning even though to most it was just mist. Spraying is Brodys worst feeling by far, you should have seen how he felt. I was relieved once we were through and I saw the penguin exhibit ahead, he loves the otters so this was a guaranteed. I head  over and there’s a rock overhang to shade the guests and Brody slips back into sheer panic and I feel like calling it quits at this point. To summarize the rest of the time there, reread this post three times and that’s how it went. I briskly exited the zoo feeling defeated and bummed out, I really thought he would like it. I quickly circled around and felt better because I had tried to make him happy and there was no way to know it would be that awful for him and the day wasn’t over. Time to adapt. 


One thing my kid always loves is bouncing so off to the trampoline park we went. I knew I had saved the trip and it wasn’t a waste as soon as he stepped on the court. I swear he was floating from trampoline to trampoline, squealing with joy having the kids section to himself. After an hour of fun it was back home for us with some M&M’s as a cherry on top for my sweet boy. We got home and outside he went, playing in the sandbox, coloring with markers and swinging in the hammock like we do every night. Even as I wrote this my little buddy sat in the gazebo across from me, drawing spiders and snowmen, happy as can be. I’m proud of myself for adapting, keeping my composure and making lemonade out of what seemed to be a tough start to my day with him. He’s happily washing up in the tub now and singing blue clues to himself so I think he would agree if he could talk. 


So many little lessons in today post, for parents and those on the outside. I’m thankful for the day I had with him and the ongoing lessons having him in my life teaches me every day. Today threw me a few situations I had to Apply these new lessons towards and I am still here to tell the tale. We will both be sleeping well tonight!