The Cry For Help From Parents of Autistic Children

Last night my husband, myself and our son Huxley attended our nieces high school graduation. I spent the majority of the day getting ready for this 1 hour event which was held in the high school's gym. When I mean getting ready, I don't mean doing my hair and makeup, i mean making sure we had everything packed and situated to make sure Huxley who happens to be autistic and currently non verbal has the things he needs to be able to handle the event. We needed to be prepared for his sensory needs. Huxley is a sensory seeker opposed to a sensory avoider. Sensory seekers typically underreacts to sensory input, so they may seek out more input. Sensory avoiders overreact, they become overwhelmed and may avoid the input. Both are considered as a sensory processing disorder. For Huxley as a sensory seeker, he does not have issues with loud sounds. So for him, we did not need noise cancelling headphones or have to worry about the excited parents with foghorns. Huxley has a very difficult time staying still. He constantly needs to be moving his body. You will often see him spinning, jumping, flapping hands. That is called Stimming. He is moving his body to increase his input, which will overall regulate his body. He also uses vocal stims, where he lets out babbles randomly when excited. So one issue we face is sitting in stadium seating is difficult, when he is squished in between people and if people are in front of him or behind him he doesn't have the opportunity to move his body without kicking and pushing the people next to him. We need to find a section of seating that allows him space.. Luckily his grandmother got to the gym earlier and was able to get us moveable chairs in a handicap area. Another issue we face is eloping.. Which is him wandering off with no fear, not realizing we are not right behind him and therefore easy to get lost. Especially since Huxley is nonverbal, there is no way for him to tell someone he is lost and or who he belongs to. Now I will say, his eloping has gotten MUCH better over the last few months. He is learning to stay closer to us, but he still has his moments of taking off with no warning. One thing that helps Hux settle in, is screen time. I know some people can be so judgmental of screen time, but for us and our son, it can be a life saver. Huxley LOVES numbers and letters. So if we put on videos like number blocks or videos about the alphabet, he will get so engaged he will actually sit for long periods of time. Of course, having snacks and drinks in hand helps any toddler so we made sure we stocked up in my purse. Overall Hux did great and it’s because we have learned what our child needs to be successful in public settings. While at the graduation there was a child, probably around 3-4 years old. Child was accompanied by what seemed to be their parents. Almost the entire graduation, the child was screaming at the top of their lungs. I was seeing the stares people were giving, the eye rolls, the mutters under people's breath saying they need to take their child outside.. Now I am NOT assuming that the child has sensory needs and or that the child didn't. But what I did assume, is that the child NEEDS something. That child was acting out screaming, crying, throwing themself on the floor and the parents just ignored. Now, I will NEVER bash a parent on their parenting style but being ignored was not helping the child in this situation. I had such a hard time watching other people around them jump the gun that this child was automatically a “bad” kid acting out, and why can't they just shut that child up… My head went straight to, maybe that child is overstimulated and needs more resources to be able to sit through the graduation. Now, before Autism entered our world, i might have been that eye roller and muttered similar things, but thats why its so important to spread awareness that not all behaviors are considered attention maintained Maybe the kid was acting out, maybe the kid did have sensory issues but whatever it was the parents' faces looked overwhelmed and downright frustrated.. We can not judge anyone unless we walk a mile in their shoes. I wanted so badly to just go up to the parents and say you're doing great, but if you need help, I would love to help in any way but I didn't know how to approach them and not seem creepy in the middle of the graduation. But I was probably wrong for not offering assistance because I know the feeling. I know how the stares feel, I know how the judgey eyes of others can cause you so much anxiety. So for those parents I'm so sorry, no one offered you support including myself If you are out and about and see a parent with a child struggling, please don't assume that child is bad, please always assume that child needs some sort of resource to succeed and if you see that parent overwhelmed, let that parent know their doing a great job, it's going to be ok and ask if there's anything you can do to help.. You might get backlash but you might also get a hug from a parent that desperately needed you at that very moment.

So today I turned the big 40! Yup, I’ve made the big climb up the peak and staring down the other side. My husband asked me this morning how does it feel to be 40, I shrugged my shoulders and said ehh the same, I’m just happy to be alive. But all jokes aside, 40 is a big birthday, a big milestone. I look back and think how absolutely blessed I have been the first 40 years of my life. I have accomplished so much and I truly can say I value the person I am today. That’s not to say that things have not been rough. The last few years I have been challenged more then I have ever been. Being a Special Needs parent was not in my plans, but god felt otherwise. I’ve read a quote once, god will not give you more than you can handle, if you face a big challenge you have a big destiny. I’ve always believed in destiny. So what is in store for me, what’s my next chapter? What am I destined for? I truly believe I was destined to be Huxley’s mom. I was built to be tough, strong and have a voice when my child may not. My mom superpower is to advocate!! So what do I do with my new profound superpower? Well I stand up tall, loud and proud not just for my son but for all of our babies that need some TLC. Did you know… That drowning is the leading cause of death in autistic children, children with autism are drawn to water due to its calming and sensory feel. That more then half of autistic children elope, which means that they ran /wander away from caregivers. This can be due to their lack of fear. This can often happen, while an autistic child is in their own home, they figure how to unlock doors and bolt outside. An estimated 40 percent of an Autistic person are nonverbal. That means in order to communicate they need to learn other means such as pointing, PECS system, sign language and speech devices. There are many benefits to a speech generating device, but for many the cost can be pricey For an parent of a special needs child, caregiver burnout is real and dangerous but sometimes they don’t have the help or even the means for a respite worker to come in to allow the caregiver a break. Many Insurance companies try to find loop holes not to cover therapies, especially for those on a long waitlist to get their child an official diagnosis. There are limited resources for children with special needs to enjoy sensory friendly events or events with less crowds for over stimulation Knowing all these things, there is a HUGE need for more resources for the Autism/Neurodiversity community. Doing my research I have come across some amazing foundations and or non-profits that strive for the same goal which is Autism acceptance!! So with all this said, I will share with you my birthday Wishlist for my big 40.. I want to build on what these other organizations are doing and I want to create the Our Stimming Bee Autism & Neurodiversity Foundation in honor of Huxley and his fellow peers. This will not be easy, this will take a lot of my spare time up, but I’m up for the challenge. I want to raise money for Swim lessons, build enclosed fencing for elopers, gift speech devices for those in financial needs, sponsor special need night outs with respite workers so caregivers can do a date night, I want to help lift some financial burden for those needing therapies that are getting push back from insurance companies and so much more. My goal for 2023 is to start the foundation and raise enough money to help 10 families in need, and then each year after that help more and more. How will I do this you ask, well from the help of all of you. April 1st kicks off Autism Awareness Month and my first step is during the month of April raise money to help get the foundation started all while spreading awareness. To raise the money, I have created an Our Stimming Bee T-Shirt that I will be selling online via our website Ourstimmingbee.com with the amazing help of our friends from Apparel Lab here in Alabama Our goal is to sell 50 of these t-shirts.. This will allow me to file for the foundation with the state. More info on the T shirt and how to order coming soon! I look forward to doing my absolute best to help others in need and appreciate all of you for being part of our hive!!. Here’s to 40!!!

An amazing moment happened for our non verbal autistic son Huxley last week. Last year we tried potty training. Prior I read a bunch of best methods on how to potty train an autistic child. We came up with a game plan and went for it. Well after 7 days it was quite obvious he was not ready. He understood the steps, but did not understand his body. Huxley is non verbal autistic and we tried using books, videos and flash cards to help him with the process but without him understanding the sensation to go, it was just not gonna happen yet. So we figured we wait for him to show more readiness signs. Huxley has never cared about being in a heavily peed diaper and or soiled diaper. If we weren't checking his diaper constantly, he would just sit in his diaper and not give a care in the world. I hated this for him, because of this he has suffered from diaper rash issues. Fast forward 1 year later and randomly last week, he was pulling down his dry diaper and peeing in the same spot in our dining room.. odd I know!! Not sure why he picked the dining room but that was the spot he choose. So that made me believe he was beginning to feel the need to go. I watched and followed him closely and followed him to dining room where he started to pull his diaper down. I quickly guided him to sit on potty and he PEED IN THE POTTY! This was a big moment and we showed it by dancing, singing and celebrating. He got a potty pop AKA a dum dum lollipop. You could see the smile on his face, he was proud and so were we. It's been one week down of potty training and he is doing awesome, lots of mistakes still but also lots of success. Dad showed him about standing up and peeing and now that's what he prefers. Hux is very motivated by the potty pops so when we take him to pee every hour or so he is determined to go. Over the last year since we first attempted, we had briefly spent our days talking about going potty. When I went to the bathroom, I would talk about what I was doing, we would continue to watch videos and read books but nonchalantly with no stress or expectations. One of my goals for Huxley for 2023 was to potty train but again I was not going to stress it and I'm so happy I didn't because when he was ready he let us know. It seemed like he just woke up one morning and was like todays the day! All we did was follow his lead. We are working on him requesting to go by selecting the toilet icon on his speech device but he has yet to tells us on his own. It's a work in progress and that's OK. For now we will continue to just take him every hour or so. For us, the articles we read defiantly gave us some tips, tricks and insights but the best advice for us, was to follow his lead. We still have a long way to go before we can say we're potty trained but we are over the moon excited for our boy and his continued progression.

To start off let me explain briefly what ABA is and what it stands for. ABA is Applied Behavior Analysis. In simple terms it is a type of therapy that can help autistic children improve social, self care, communication and play skills. It is also known to help reduce certain behaviors. Our pediatrician recommended we begin ABA during Huxley's 3 year well visit. At that time I had no idea what ABA was and in what ways it would help our son. We were already doing private speech and occupational therapy at a local facility and in an early intervention program through the school system. So I did what I do best and started researching, what is ABA and oh my I was shocked to learn that it actually is a very controversial topic. It seems that the autism community is split down the middle on how they feel about this type of therapy. I read how it was cruel and unethical and on the other hand I read what amazing benefits it provided. I was torn, what do I do? So I reached out to professionals. I reached out to Speech and OT therapists, I talked to early intervention teachers, I had meetings with ABA therapists and of course discussed in my autism groups on Facebook that I belong to. After all that I was still more confused than ever. I knew I needed to sit down with my Husband and truly think about what was best for Hux. I knew there were very long waitlists to get into ABA, so we decided the first step was to get on those waitlists. If we were told a spot opened up for him, then we could always say no thank you when the time came, if we decided against it. Several places I called within a 45 min drive, were all 1-2 year waitlists, so I didn't even think Huxley would get to attend even if we wanted to because at that point we would be heading into Kindergarten, whatever that looked like. Early December I attended a Speech Device training at our local university. Mostly in attendance were therapists but there was one other mom like myself. We talked during breaks and she told me her child was in ABA and they loved it. She had gone on to explain that her child's therapist actually just opened up their own facility locally. When I asked the mom for the information ,she said the therapist was actually there at the training. It was perfect because I got to talk with the therapist and she put me on her waitlist which was only 6 months. Last week I got an email from that therapist explaining a spot had opened up and they wanted to offer it to Huxley. We were offered a tour and to sit down to discuss what ABA would look like at their facility. We agreed that a tour and sit down talk would be great. We fell in love with the facility. It was small but big enough to have several different themed rooms for their therapy sessions and play time. After the tour we sat down in a conference room and we got to voice our concerns. The one thing I read that I did not like was I heard that some ABA places will try to deter your child from stimming, which we are 100 percent against if it's not leading to any type of harm to our child or anyone else. We spoke on this and they reassured me that is not how they do things. We spoke about their RBTs, which are Registered Behavior Technicians. They work under the BCBAS (Board Certified Behavior Analyst). It is actually quite easy to become an RBT. I've actually looked into getting my RBT certification. It requires an online course and a test. A certification can be awarded in less than 2 months. So we were worried about RBTS not being qualified enough to work with our child. We were given some guidance on what roles their RBTS had and what additional in house training they go through once employed. After the tour and meeting, my husband and I agreed that we needed to give ABA a try. We owed it to Huxley to try. We will see how it goes and if we see progression. We decided on 3xs a week from 8:30-4:30, the other 2xs a week Huxley will stay in the early intervention pre-k 3 as we found it is important to do both programs. Sometimes as parents we have to make really hard tough decisions and sometimes we are not 100 percent sure if it's the right thing to do or not.. but we have to try and keep trying to provide him with resources for him to succeed. I do truly understand why some people might choose against it. ABA can be very long days for our babies. I respect those that decide it is not best for their child as I would hope others would respect us as parents who want to give it a try. Huxley had his 1st week this week. He smiled going in and he smiled when we picked him up. You can tell he was tired, but we expected that.. since it was his first couple days going full day. I got a report on everything he did and ate and they told me he was super smart and very loving. So week one went well and we are looking forward to see what the future holds for him at ABA.

I was very excited to open Huxley's school folder to find a birthday party invite from one of his classmates. I immediately checked our calendar to make sure we were free, which we were. I texted the birthday mom to say Hux would love to attend! The mom let me know the details and explained it would be held at a local karate center. At that moment I began to get nervous. What if the party was super structured and what if he would be asked to sit still and listen to instruction? I thought maybe I should call the mom and explain Huxley is autistic. I'm assuming she doesn't know, because in most cases for 3/4 year olds, parents ask teachers for a list of classmates names not truly knowing who the class mates are yet. Or maybe I should get to the party early and talk to the Karate school and give them the low down. From the time I got the invite to the actual party was 1 week. So I decided just to be excited for Huxley that he got an invite and think about things later The day of the party, I had yet to talk to anyone. I just wasn't sure what to do! As an autism mom, I will tell you it hard to consistently have to tell people, ohh he's autistic like I have to forewarn or set a bar for him. So I decided we would go with the flow, and if challenges come our way we will deal with them in the moment. So off we went, with a present in hand. When we pulled up to the karate center, I saw boys and girls with their wrapped up gifts and their adult following behind them. I grabbed Hux's hand, took a deep breath and said ..Here we go! As we opened the door, angels started singing Hallelujah!! Not really, but what we saw were 2 big bouncy houses. It was a big relief because this was right up Huxley's alley. Trampolines and bounce houses are part of his daily stim routine. We kicked off our shoes and he ran straight for the one with the big slide I followed behind him, but kept my distance. I wanted him to feel free and independent but If he needed me or needed to communicate with someone, I was right there. His smile was an indicator he was having the time of his life. I noticed only 2 kids from his school and the rest looked like family and or friends. The birthday boy said Hi Huxley and ran away, which made my heart happy. Kids ran around, jumped, slid, played tag, did some cartwheels and overall just having fun. No one tried to include Huxley in their activities, but since it was majority family and friends I understood why but to Huxley he was so content just doing his own thing. At one point, I jumped into the moon bouncer with him and we just jumped and laughed. As I'm looking around, I noticed that their is only myself and one other adult in the play area. the other adult was tracking behind a baby.. and here I am tracking behind a 3 year old. As I pan the room, I see all the other adults socializing with each other. I will tell you honestly I had such mix emotions. I LOVED being able to watch Hux and interact with him as he played, watching the smile on his face but I also wanted to be able to meet other parents chat and mingle.. We moved to Alabama 2 years ago and I have yet to find "my" mom friends. You know the ones that call you to complain about mom stuff and ask to go on coffee dates, to talk about more mom stuff. I adore my husband and he is my best friend, but I cant complain about mom stuff to him and him understand.. its a mom thing! We were called over for some pizza and cake into a small area party room. I sat with Hux, to make sure he got what he needed. After we cleaned up, he did some more play time and then they asked all the kids to sit down and watch presents being opened. I knew this was our time to leave. Hux would not be able to sit and he would just try to run back to play area so I did not want the other kids distracted by him and take away from gift time. I politely said thank you to the hosts and we left. My heart was so happy for Huxley, that he had a fun night but Ill have to say I left a little sad. Not once did anyone come up to me and strike up a conversation. Now I know I could have, but it's harder for me, when I have to keep a close eye on Hux. Anyone that truly knows me, knows how social I am and how much I love being involved. I felt like the outsider. I felt like the last one picked in dodgeball. It made me feel sad, and you know what that's ok! I'm allowed to feel sad and left out. I don't know if I looked like I was anti social because I was with my child the whole time but of course that wasn't the case. It was strictly I have no option but to be close to him, its a safety issue. I especially do not think, the adults there were a bunch of mean girls, you cant sit with us type. Not at all. I think they just didn't realize, hey maybe I should just say Hi to that mom she looks like she has her hands full. I write these blogs and share our stories, so that people realize how parents like me might be internally feeling. We are so very thankful for Huxley to be invited to a birthday party of his peers. Inclusion matters so much. Inclusion for our children but also inclusion for us parents as well. I truly hope there our several more invites in his future and next time I will try to find ways to interact with the other adults in the room as well

When I stop and think about the day we found out we were pregnant with Huxley, I instantly can feel the happy little butterflies again. It's the craziest thing, at that moment I was only 8 weeks along and had no idea if he would be a boy or girl, what his name would be and or what he would look like but I knew I was head over heels in love. As each day my belly grew, so did my heart. I honestly thought my heart was going to explode the moment they placed Hux in my arms. How can I feel so much love for someone that I had never met until this moment, but in my eyes our souls had been attached the second my pregancy test said pregnant. Shortly after he was born, I would wonder if he felt the same love towards me. I couldn't wait to hear the words Mama I Love You come out his little sweet mouth. Well so I thought! I thought I couldn't wait, but I learned I sure can. As time has passed, his verbal communication has not yet developed. So my eagerness for him to say I love you turned into hope but with understanding. Hope that he will verbally communicate one day but understanding that he might not. With hope and understanding leads to acceptance. I accept the fact that today my child is non verbal, I accept the fact that tomorrow he might still be non verbal and I accept the fact that in a week from now he might also still be non verbal. Having a non verbal child has its challenges but what I have learned is there are some many other ways to communicate. We use basic sign language, pointing, body language and now a speech device. I read a quote while I was doing one of my late night google searches, "Love Needs No Words" and it stopped me dead in my tracks. I don't need to hear Huxley say verbally I love you, do I want to hear it yes, but do I need it, No! Every day Huxley embraces me with hugs/kisses and he grabs my hand to hold it even if its for a brief moment. He allows me into his world and truly that's all I need. I know he loves me, he shows me affection in so many ways, just his way! Having a nonverbal autistic child has opened my eyes to a whole new world and for that I am so grateful. The neurodiversity community is so beautiful if you allow yourself to see past the different ability of it and see into the beauty. Today is Valentines day and for Huxley's pre-k class we made blue heart shaped sugar cookies and I created on canva an autism awareness v-day card. Huxley wore a shirt that read Love Needs No Words with a big blue heart. This is his way of sharing his love with his fellow classmates. I don't expect the class of 2-5 year olds to understand yet, but I hope that as Huxley grow's with these kids, they will understand he is just like them in so many ways and that the way he loves is no different. Verbal or non verbal I will always treasure the love my child and I share without words.

1- He might be non-verbal but he has a lot to say One misconception about people with nonverbal autism is that they lack intelligence and or they have nothing to say. Being nonverbal does not mean non-thinking! Huxley has a voice, it might not be verbal but he uses sign language, body language and now his speech device to communicate he wants & needs. If your in a room with him, talk to him! Ask him how his day was, ask him what type of drink does he want, ask him what color is his favorite stuffed animal. He will tell you, in his own way. I see some people who encounter him not talk to him, because in their mind he doesn’t talk, so why bother striking up a conversation. Give him the time and he will show you how wonderful and beautiful his conversations are. 2- If he does not acknowledge you when you call his name and or make eye contact with you, he’s not being disrespectful Around Huxley’s 1st birthday we noticed he was not responding to his name and was giving us zero eye contact. It was not until age 3 that I can confidently say Huxley knew his name and had started to give briefs moments of eye contact In general if we call someone’s name and they blatantly ignore us, we say ohh that person is being rude but that’s not Hux’s case. When he is engaged in an activity, he is hyper-focused, which causes him to not even hear what is going on around him. He is also having trouble with sensory processing. Which means he is having problems processing what is being said to him. So if you find him not responding, get down to his level and be engaged in his activity. By doing this you enter into his world and he is more likely to interact with you 3- He is very affectionate and loving Kids with autism can 100 percent give and receive love. Some process differently, so affection can look different for everyone. Some hug, some give kisses, some just touch your face. Huxley has a very hard time sitting still. He will come up to you touch you and then go do an activity come back touch you again and repeat the process. This is his way of saying Hi, I love you. He is not a cuddler and he does not like to feel restricted, so long hugs are not for him. But he will give you a quick squeeze and go off and do his thing. Lately he has been loving to give me kisses. He will sometimes kiss me 20 times in a roll before he runs off. I am soaking it all up. I know for him; he is saying I love you mom while he grabs my face and lays a big kiss on me. Melts my heart! So if you ask Huxley for a hug and he chooses just to touch your hand, or maybe a quick squeeze that is his way of being affectionate. We never force affection on him, but if you allow it, he will show you love his way 4- He is just like any other 3 year old In our world the word autism comes up in conversation at least 100 times a day. It’s just part of our vocabulary now. Some people think autism is a bad/scary word and its not. Yes, Huxley is Autistic, but what he is first is an overall happy, sometimes cranky, always sneaky 3 year old. He laughs when something is funny, he cries when he gets hurt, he loves going down slides, and only wants to eat mac & cheese. Sounds familiar??? Because he is autistic does not make him any less a 3-year-old. He has melt downs, just like 3 year olds do when they don’t get their way. The only difference is, his brain processes things differently than a typical 3 year old. He might not hit milestones that same way and he might communicate differently but overall he’s no different. So please do not treat him differently. Allow him to be 3 and have the same opportunities and chances of any other toddler. 5- Autism is not a disease, it is a neurotype As his parents we are not trying to cure Hux’s autism. Autism is not a disease, its not one of those situations where you can take 2 in the morning and bam Autism is gone. What we are trying to do is educate ourselves and others on how there is not just one way of thinking and learning. We as neurodivergent advocates want to see the world not trying to fix autism but instead embrace and accept it. Yes, my child can struggle in areas his peers may not, he might be in the corner jumping up and down, flapping his hands stimming trying to regulate his body to be able to process information more effectively and that behavior can seem odd to outsiders. If non harming stimming helps my child learn, then why would I stop him, I would never! So if you see Hux, stimming or doing “odd” behavior do not judge him, he is doing what he needs to do to process life. I might be biased, but Huxley pretty much is a rockstar 😉

Last Monday January 30th, 2023, my husband Blair and I celebrated our 2-year wedding anniversary as well as our 5-year anniversary from the day we both swiped right. Sometimes it feels like we have been together forever and other days it feels like we just met. I recall the day so clearly, when I got the notification that we had matched on Bumble. I remember I swiped right because in his bio he was a cheerleading coach, as well as myself and of course I found him extremely attractive. Our 1st conversation was flawless. We connected on so many levels and would talk on the phone till 4am like 2 high school kids. We began as a long-distance relationship, I was living in Atlanta and he had just moved to Columbia, SC. One of us would make the 8 hour round trip every weekend just to see each other for 2 nights. After dating for 6 months, we both agreed it was time for one of us to make the move, so we could be together more often. We were both in our mid 30’s and didn’t want to waste any more time. It was one of those when you know you know situations. So, I packed my bags and moved to SC. From there things moved fast. We bought a house, got pregnant, both switched careers, we had a baby, got engaged, sold our 1st home, moved to Alabama, bought our second house, got married, started a small business together and that’s just some of the things we have accomplished over just a 5-year spam. Together we are raising 4 beautiful children Kai 14, Rylee 13, Samantha 7 & Huxley 3. Kai, Ry & Sam call me Fallon as I am their bonus mom and Hux is mine and Blairs son. So, with all this backstory, you can put together that Blair and I did not have the privilege of a honeymoon period. It was kids and responsibilities from the jump, but we knew we were head over heels for each other. What we did not know, is how disconnected over the 5 years we would become. We have accomplished so much and have had our highs and lows. We started our relationship working as a duo team but slowly it became your responsible for this and I am responsible for that scenario. Currently I am a full-time working mom who also is a full time at home caregiver for our son Huxley who was recently diagnosed moderate to serve autistic as well as ADHD. My husband puts his blood, sweat and tears into our newly started small business and works very long hours so that we can meet deadlines. He is typically out the door before 8am and I don’t see him again till dinner time. My husband recently said to me. I feel like I am the third wheel when it comes to you and Huxley. At first, I got upset, like how could he feel that way. that is ridiculous. Huxley needs me more than anyone so of course he needs a lot of my attention. I looked him in the eye and told him I resented him for not being home enough to help me and or when he was home, that we barely talk to each other. The talk went in circles. We were not listening to each other needs. It was clear we were disconnected. We both agreed if our relationship continues this road, it will not end well. We love each other, that’s not the problem but love is NOT enough. We need to reconnect. We need to be on the same page. We need to date each other again. We need to be on each other’s priority list. We are rockstars when it comes to work, we are killing it as parents, but we are failing our marriage. We are both trying to keep our heads above water, me with caregiver burnout and him with trying to make our small business succeed. With us being disconnected and so focused in those areas, we are not being each other support system. We always have excuses why we cant go on dates or do a getaway together. “Were behind schedule at work” “Huxley needs me” those are two of the top excuses. Last month, I said to myself. I want to fight for my husband. So, I said screw all the excuses. Let’s plan a 2-night getaway. Work will just have to wait, and Huxley will be fine with my amazing sister and brother-in-law. I researched getaways within 5 hours from North Alabama that was off the grid. A place where we can put our phones down, a place where we did not have an itinerary, just a place where we could just be Fallon and Blair. Not mom and dad and or business owners I stumbled upon Bolt Farms in Tennessee. I fell in love with the owners back story of why they created it and they talked about reconnection with your spouse. SOLD!!! It was not in our budget, but I did not care. Our marriage needed it! I booked our 2 nights stay for our 2-year wedding anniversary. It took us just over 2 hours to get there. It was in the middle of nowhere Tennessee. PERFECT!! We had our own private Dome shaped room, with dual outdoor showers, hot tub, yoga deck, all with amazing mountain views. Inside was a small kitchenette with a romantic ambience. My favorite part was the board games and adult coloring books. We spent our 2 nights just laughing and enjoying each other again, like we used to. We cooked together, Blair kicked my butt in Yahtzee and cheated on scrabble. QUAN is not a word!!! No emails, No work, No kids, just us!! It rained almost the whole time we were there, but we did not care. We barely left our dome. When we packed up the car to go home, I knew reality was waiting for us. I knew I was going back to our “normal” lives, but I smiled because I felt hope, hope for us. Bolt Farms gave us that hope and that start to reconnecting. We both realized how much we want this marriage to work and how we would do anything to get us back to where we need to be. We made a pact to do date nights and or weekend getaways. I wish I could say our getaway fixed all our problems but realistically our problems cannot be fixed in 48 hours. But what it did was put us back on the same path. It made us realize we miss each other. As the full-time care giver to our special needs child, I felt like I must be there 24-7 but I don’t. we have amazing family support that can help us. We now understand that work will be there, and its ok to pause. Who is to blame for our disconnect, it’s not Autism, it’s not work, It’s ourselves. We got so wrapped up in our “priorities” that we allowed it to get to this point and it's up to ourselves, together as a team to get back to that feeling we had when we first fell in love. To my husband Blair.. I love you and I love our life.. We got this!!!

Huxley is currently nonverbal with a diagnosis of moderate to severe autism. I often wonder, what does he think about? It's quite apparent he understands a lot and can follow multi step processes. For example, if I say Huxley throw this in the garbage and I hand him some trash, he will take it from my hand, walk to the garbage can, open the lid, throw the trash away, close lid and walk away. Huxley scores much higher in his receptive language which is the ability to understand vs his expressive language which is the ability to communicate. With him being nonverbal, it’s almost impossible to understand what he is thinking majority of the time. I know when he falls down and gets a boo boo and cries and comes for a hug, he’s sad. I know he’s hungry when he hand leads me to the fridge and points to the strawberries. What I don’t know, is does he think the sky is beautiful, does he have a good day at school, does his feelings get hurt, What’s his favorite color? Does he think and speak words in his head but just can’t verbally say them? I don’t know. Hux was given a speech device for Christmas, and it has opened a whole new world for him. He is still in the very early stages and only identifying using one-word responses but he’s learning so fast. The other day, I asked him what drink he wanted. He choose juice. I said blue or apple and he said blue. Since the Autism spectrum is not linear, and it’s so widespread, there is a lot of unknowns. The unknown is/can be a very scary place to be. We don’t know if he will ever verbally speak, I pray and I hope but reality is we just don’t know. We do our speech therapy a few times a week and we use the speech device majority of the day, but will these resources bring on speech?? Again, I don’t know! I sometimes imagine what his little voice would sound like saying Momma I Love You or guess what I did in school today. When I sit an imagine these things, I get hopeful, but I almost feel numb. I am not sad, but I’m not happy. I just imagine it and move on. To be honest, since the moment Autism was mentioned to us and even on the diagnosis day, I have yet to cry or feel any need to grieve. I think it's because since day one I entered fight mode. Flight was not an option, so fight mode it was. Every day for the last almost 2.5 years I have been fighting for resources, fighting insurance, fighting advocacy, fighting for the diagnosis, fighting waitlists. the list goes on and on. I don’t think the fight will ever end but maybe one day the tears will come. Autism is not a disease, it’s not something you cure. It’s not a death sentence but it does make our child’s life a little harder in some aspects. As mamas it’s our instinct to want to wrap our special needs child up in a bubble and shield them from everything wrong or hard in the world. Since we can’t truly do that, it’s our job then to show them how to push thru any obstacle their way and tell them Autism might be labeled as a disability but truly it’s just a different ability. We all process our journeys differently, there is not one way to feel. Sometimes I wish I could just scream at the top of my lungs and cry about it, because its ok to grieve the diagnosis. Its ok to feel sad and or mad at the world as long as you need to. For me I feel like I skipped over majority of the stages, I never went thru Denial, Anger, What If and or Sadness. I went straight to Acceptance. My brain automatically went to ok, let's do the damn thing. Maybe one day, I will be able to back track and have my moment to grieve, and if so, I will embrace it with open arms because at times I feel bottled up and my cork just wants to pop. But until then we continue to fight the good fight and embrace every small victory to shall come our way