Here comes Kelcie, the squeaky wheel.

Facebook is a great site for so many reasons. I try to block out political posts and all those afwul pictures of suffering people am animals because I don’t need more negativity in life. The great things about it is I get to stay in touch with those I don’t regularly, it brings people close who you may not have been close to before and you can keep people updated on things going on in your life. Today, the on those day feature really got to me for two reasons.

On this day, two years ago, Brody had a virus that made us have to pull him out of daycare. I specifically remember having to go to the pediatricians office so often the receptionist knew me by name. I had to bring Brody probably two times a month, mostly for ear infections and then colds. While this aren’t serious things, it’s heart wrenching to see your child suffering or in pain. I hated feeling hopeless and did just about anything I could to make him feel better. This poor kid has seen so many doctors, as soon as we walk through the doors of one now he instantly puts his hand over his ears. He was on so many prescriptions so frequently that we had to cycle through different ones because they would stop working.

I say this with caution but Brodys health has improved so much. Sometimes you don’t realize as you go the leaps and bounds you have come until your faced with a reminder like I was. We went to the ears, nose and throat specialist today for a checkup. Brody had tubes put in both ears and adenoids removed. The imroovements I have seen since then is amazing, a complete turn around. He is understanding what I say and following directions, is so vocal, isn’t covering his ears and hiding anymore and is just overall happier. I can’t imagine suffering in silence, not able to comfort yourself or communicate how much pain you’re in. 
Going gluten and dairy free for the most part has also turned around his health. His stomach and digestion problems have almost resolved, his complextion is improved and also his anger problems have come a long way. The Brody I have now is not the Brody I had six months ago and I am so relieved for both of our sakes.

I want to take the time to say that a lot of the testing and appointments we had were because I didn’t stop pushing forward. There were times where I could tell that people were annoyed with me because I was a squeaky wheel. My parents raised me to be vocal and stand up for what I think and while some roll their eyes at me it has gotten me far with Brody. I can’t tell you how many doctors said no to his need for surgery, who said its typical for kids to get sick and it’s just how it is. I refused to believe it, I knew it my gut something was wrong which kept me searching for answers. I am thankful to have amazing therapists and eventaully great doctors who guided us down the right path to where we are now. I know there are times when it can be uncomfortable and awkward to go against what others think but at the end of the day it’s your child. You know your kid better then anyone and at the end of the day you need to be able to rest your head on your pillow and say you did all you could. You are your child’s advocate when they can’t be and I promise, had I not vocalized and fought like I did I would be right back in that waiting room with a sick kid every other week. 

Please be your child’s voice, If your gut tells you somethings not right there’s a reason. You have a parents intuition and I encourage you to help your child in whatever situation that isn’t sitting right with you, not always health wise either. Being a parent isn’t always easy or comfortable but pushing yourself out of your comfort zone helps both you and your child. The appointments we have have shifted from him being in pain to now checkups on his progress and that is something to celebrate. So while new things to overcome pop up everyday I’m thankful that the health problems have pretty much been resolved. One less worry off our shoulders and it feels so good. *high fives myself*

I’m guilty.

I usually write my posts in the morning so I think that may be why I am usually all over the place. I’ve been home for two days from vacation now and I’m still a little jumbled and trying to let the dust settle. I’m buried in endless laundry and cleaning, trying to snap things  back to order which is quite a process. 

I apologize for my absence on here, I shouldn’t neglect this blog as bad as I do. While I was on vacation for nearly a month I was overwhelmed with how many people read and were touched by my blog. I honestly set out to just try to change one or two lives, if I did that then I had accomplished my goal. After collecting myself now that vaca is done I’ve seen that my reach was a lot further than I had imagined. What floored me the most was the huge cheerleading team that was behind us, everywhere I turned I was getting hugs and we were just showered with love. I’m honestly choked up as I write this because it’s something  I actually can’t put in words to know that what you’re doing is working. I’ll tell you, I’m hellbent to make a difference in the world my son will be living in and to know it’s working, even on a small scale is so amazing. 

One unexpected thing this vacation brought was some self reflection and perspective that I was needing. I got to spend a lot of alone time with Brody, I tried to absorb every minute of this time because I’ve never seen him as happy as he was then. His smile was truly ear to ear, skipping all over the place and just squealing ( sometimes happy screaming) so many times while home. One night in particular while I was sitting on the beach at sunset alone, watching Brody happily wade in the ocean I felt envious of how happy he was. Don’t get me wrong, some things make me happy and he makes me the happiest of them all but I just realized my mind is always busy and on a million other things. He was careless and light while I felt weighed down and just realizing how many things consume me. I have said it before that I am my own person who is also a mother, not just a mom. This ties in because I have been made very aware that there are things that are sitting heavy on my shoulders and I wish I could shrug off and carry on. I kept thinking about how I want just a clean slate, to start over with some things, to take back mistakes or foolish things I’ve done that I’m not proud of. The thing is you can’t take them back but you can change your course and learn from them. 

What I just wrote is hard for me to admit considering my Scottish roots make me very stubborn and it kills me to ever admit I’m wrong. Vacation made me swallow my pride though, I was almost sick of myself and making excuses. I keep wanting to change things and get motivated and it’s nearly the death of me but I can do it and I am just choosing not to. I always think that I want to be a role model for Brody and live a life I’m proud of and right now that’s not quite where I am. Sometimes I get so overwhelmed, lose balance of priorities and forget that I’m not only learning about myself and my son but also how to be a mother. Autism throws a curve ball in all that as well, every day brings a new challenge in addition to the challenege of parenting. I need to have a clear mind to best navigate through these times and I’ll never have that if I keep down the path I’m going. 

I know it’s a corny metaphor but as I was driving down to see my mom I was driving my dads two seater truck and Brodys next to me just happy as can be. Country music was really reaching me with the sun shining, windows down and my hair blowing and I just felt a moment of being light and it was a vacation of its own. I beat myself up, worry myself to death, put up with more then I ought to and ignore things that I should be putting a stop to and I’m so guilty of putting that weight on my own damn shoulders. Like Brody, I deserve to be happy and seeing moments of happiness break through the clouds while on vacation put a fire under me. You know that saying that you can’t love anyone until you love yourself? I think it’s the same thought process for being a good parent and role model, you have to take care and love yourself first. The past is in the rearview mirror and I need to focus on our road ahead. Changes are big and small, they take time and sometimes are hard to go through but as long as I come out at the end with a happy me and a happy son that’s what matters. He is everything to me and he deserves a strong mom to stand next to him, teaching him to face the challeneges and obstacles he will face in life. This post has been more of a release and self realization to wrap up my vacation and turned more into a self help post for myself but maybe someone sees parts of themselves in me and take something away from it. 

Thank you, again, to our cheerleaders who are always in our corner. I need more people like you and let the rest fall away….💕

But why?

Real talk time. I am someone who will research for days before making a purchase or making a decision. I want as much information as possible before making any moves. I will pour over reviews, blogs, websites and I will post asking for opinions and personal experiences. Autism has proven to be my most challenging topic in my life because there are no definitive answers. I have never had a question or asked why and not gotten an answer and every day this has gotten more challenging for me to accept. I just want to know why. 

Brody is nonverbal,  doesn’t sign and has yet to take to the pec system. I feel like my minds a hamster on a wheel all day, always trying to be in his mind, thinking ahead and attempting to guide and help Brody by using my instincts to figure out what he wants. I am so into expressing feelings and while Brody can’t verbally express his feelings, I still make sure to tell him mine. The great thing is that I feel more in tune with him and feel like we move in sync sometimes. While we do have times where he doesn’t listen, I feel so in tune with him and the connection we have really melts my heart. 

I think a challenge I face is that Brody and I deal with a lot behind the scenes that most people don’t see. Being so in tune with him can be exhausting,  even the slightest change in his demeanor can mean something significant. Today is what sparked this post because it’s a perfect example of what I mean. Brody had a great day, well behaved for him, being social and having lots of activity. I slowly noticed towards the end of the day he started spacing out and just not quite acting like himself 100% although barely noticable to those who aren’t always around him. When we got back to his room he laid right down in bed and was acting stuff and almost frozen in a fetal position. While this doesn’t happen on a regular basis, I know that he most likely had sensory overload from the day’s activities and needed some compression. He likes the hang around my neck like a koala, our foreheads touching, my hand around his legs so they are tucked in and my body weight slightly on him. I’ve tried blankets, sheets and several other things to solve this feeling but this seems to be the most effective way to help and I don’t mind. It’s actually flattering that I can be such a relief and a comfort to him and I can’t help but take in this cuddling time. He typically doesn’t like to be touched and cuddled so I try to enjoy moments like this. 

While I am aware that there are some answers and that there’s new information coming out all the time about autism and sensory processing disorders I’m always wanting to know more. I wish I knew why these things happen, what goes on in his mind, how it feels and what he wants. Most of the time I feel like I pretty much have it down how to help but I always wonder if there’s more I can do. I’m sure I’m not alone in this feeling, if your child has autism or not, you just want want to help your kid as much as possible. Parenting is such a learning process day to day, it has taught me a lot in ways I never had imagined. I’m constantly amazed that such a little human is teaching me so much unintentionally just by being himself. 

I hope that eventually we can get some difinitive answers about the causes of autism and that with it comes some ease for parents. I know there’s nothing I can do but take things day by day and I wish I could switch that thought off in my head but it’s just not that easy. Why seems to be a question always hanging in the air but every day I am just learning pieces of the answer just but observing and using process of elimination. I am so thankful to have an amazing child and my love for him just grows every day. Now is time for me to switch my brain off for a bit, although he is twitching more then usual he seems to be in a deep sleep. Goodnight all…

Let me tell you

My eyelids are heavy and my eye is twitching from exhaustion. I am coming down with a cold that I am sure is a result of stress and lack of sleep. Vacation is such an exciting and special thing, I am so thankful that I am able to take one at all considering many aren’t able to. The things we have been doing and the amazing friends and family we have seen during this trip already has made my heart so happy. I love talking to people about our visit and catching up, so many people I have been missing. I have received so much positivity on not only Brody and his journey but my health/fitness progression as well which is so appreciated. It is so flattering to know that people are truly paying attention and care about the daily things going on in your life, especially living 8 hours away and seeing them once a year if I’m lucky. The outpouring of support I have gotten for Brody and just the love I hear in everyones voices while talking about him just leaves me baffled. He is so lucky to have such a cheerleading team behind him, only wanting the best and success in his life. I just wanted to take a minute to say thank you, even little comments and conversations mean more then you will ever know. Your positivity and encouragement give me strength on some days where I am struggling and feeling low.

So now for some real talk. So many people follow up our conversations with something along the lines of “enjoy your vacation, you’re lucky to get time off” or something like that. The thing I’ve learned and come to understand about vacations and time off is that while my day to day activities are different and a lot more fun, there is no vacation from autism. Brody has been great and truly have never seen him as happy as he has been. The thing is with the highest highs comes some low lows. His temper tantrums have been so out of control, his anger and hitting/ kicking is to the point where it is leaving a bruise and his attention span is nonexistent. I love my child through it all of course but as I’m typing this I am a zombie of exhaustion mentally and physically. In between typing this I have probably peeled about 12 crayons and have been redirecting to coloring to avoid a meltdown. None of the things that normally make Brody happy or calm is working today and I am left confused on how to even handle him. I am not sure if he is on sensory overload and just coping with the change of scenery since I am at my moms house now for a while but it is strange to watch his behavior. Donuts are always a go to for a happy kid but instead he sat at the table with ten munchkins in front of him, staring into space with glazed eyes for ten minutes. He didn’t touch a single one and my mom and I watched him, trying to figure out what was going on. I know I have heard and read about kids having seizers where they stop everything and look up and stare off into “space”. I will tell you, one of the hardest things to swallow as Brodys mom is knowing something is off with him, asking whats wrong and trying to figure it out with no response. Times like this I would love to point out to those who tell me I’m lucky he doesn’t talk because “once he starts talking, he won’t stop”. In moments like this I can actually feel my heart ache from not getting a response, I would do anything to hear whats going on in his mind and help him with whatever he is sorting out.

Now that I have gotten through the autism and sensory specific things I am going to voice something that has irritated me since Brodys diagnosis. I find that I often see “autism parents” saying things like we aren’t just parents, we are “autism parents” or other things indicating we have it so much harder. Ive already blogged about my feelings on the reference of “autism parent”. I could go on about some of the hypocritical posts I’ve seen about wanting to be included but then putting themselves in a category above “typical parents ” but that could be its own blog post for a later day. I am here to say that a parent is a parent and you all have my respect so long as you are actually parenting your child. I also want to say that the same associated with looking on the outside as you do on the inside needs to fall away. Parenting is hard you guys, give yourself some credit. I say this as I am in leggings, a baggy hoodie with a ponytail in and makeup from yesterday looking like a mess. The bags under my eyes are huge and heavy but this morning I threw on some shades and headed out the door to the park. The thing is that I knew Brody typically likes to play on the playground and I was desperate to make him happy because of the off mood he was in. Once we got to the playground he started to stare into space again like at breakfast and had no care for the jungle gym in front of him. My mom and I took a video because of the off behavior and watched him closely. He still didn’t care about it so instead it took off his shoes and brought him to his favorite field. As I’ve already stated several times I am exhausted but Brody can not pass up a chance to run freely and chase me around. I took off, “ready, set” followed off by the smallest and cutest “go!” you’ve ever heard. I ran around and around, he was smiling and enjoying himself and that made it worth it to me. Even if he was only happy for a minute, knowing that I did what i could to make him happy is worth it to me to see that crooked grin.

Basically I am just trying to get across that a parent is never truly on vacation but I admire those that still bend over backwards and go to any length to make your child happy. Personally, I feel pride in myself that i know I am the parent I’ve hoped to be and am not ashamed to sound like i am boasting about it because its an accomplishment that is far from easy. I am glad I am getting to the point where I am realizing that its ok to not always look your best (my fashion merchandising background had brain washed me into this though process) as long as you are comfortable and happy. There is no shame in these dark circles under my eyes because I got them through long and exhausting hours caring for Brody. I am coming around to self acceptance in a different way then I have ever known in my 27 years on earth. I hope someone took something away from this post, although I had a lot of thoughts on my mind as I wrote this. Hope you were able to follow along somewhat. I just want  you, you exhausted parent, to take your hand and pat yourself on the back because you’re awesome and sometimes we don’t hear it enough verbally.

I’ll end this post saying that my sweet baby put himself to sleep on the couch as I typed this ten minutes ago and is looking so sweet. I am glad his mind is at rest and am hoping he wakes up feeling less anxiety and stress. I am going to join him now so I can stop being a mom zombie and function since I am surrounded by my amazing family right now.

 

Making memories in Maine.

I know I’ve been absent and neglectful of my blog, so sorry. I am currently in Rangeley, Maine where I grew up my whole life. The week before we left was full of anxiety of packing and prepping everything and just sheer madness. The important thing is that we are all in one piece and on a much needed vacation. 

So many thoughts  keep running through my mind here. The one I can’t gets over is how many memories I have of my own here as a kid and now I’m making new ones with Brody at my side. There have been a few times where I actually had Brody looking me in the eye and told him I was taking a mental photograph. I love the fact that Rangeley and this beautiful area will be a part of Brodys memories as well and we will always share that. Brody likes tv and tablets, all that technology just like every other kid. What I love about him is how he enjoys the simple things. He loves the outdoors, water and wind in his hair. His smile goes ear to ear and is so contagious, his happiness just overflows through jumping and skipping. 

Two memorie have stuck out specifically since I’ve been here and the pictures just don’t come close to capturing it but man, I tried. We went up this beautiful hill a little outside of Rangeley that has a 360* view of the area and I swear it’s the most beautiful place I’ve ever been. Brody could not even handle how happy he was and laid down in the dirt, laying like a starfish and just looking up at the sky. When he went up the set of stairs he ran in circles and shook his head back and fourth while the wind blew his long, blonde hair. His excitement made the experience a million times better and I was just so happy watching him. I know he couldn’t talk but I just knew how happy he was and that was enough. 

Since Rangeley is so small and is such a wooded area, we had to always find ways to entertain ourselves in simple ways. One memory I have with my family is going on our front porch and watch the thunder and lightening storms. I had seen a few storms while living in NY that reminded me of this and made my heart ache a little, missing those memories. My second or third night here in Maine I was at the house I grew up in as a kid when I heard a storm rolling in. The rain was coming down so hard and lightening was lighting up the whole sky. I grabbed Brody and plopped us down on the rockers out front. I was nervous the thunder would be too loud or he wouldn’t like the rain but he was actually very curious and enjoyed it. He melted right into me after checking out the rain and getting splashed on. We rocked back and fourth, taking it all in and just enjoying eachother a company. It was so simple and perfect that I knew I’d always remember it like I do from when I was a kid. 

We’ve had so many other fun times from going to the park, watching fireworks, attending the parades for the fourth and just spending time with family. It’s been great so far and I’m drinking in every minute of it. Sometimes we get caught up in the business of work, school, city life, bills and everything else we juggle to have a nice life that simple times get overlooked. It’s a natural thing and it happens to most of us but I’m thankful for times like this to remind me of how lucky we are and appreciate these memories. I am trying to take it all in and can see it in Brodys eyes that he’s doing the same. I don’t know if it’s the fresh air or the beautiful views here but my heart is full and content.  I hope you all feel the way I do at some point because it can help center you when you’re feeling off kilter, this I can say from first hand experience. Now I have to wrap it up because I’m like a kid at Christmas, my sister, Alex is almost here to visit!! Off to make some more memories. 💕