Back to Basics

Christmas time is over and it’s time to get back to our regular schedules. As a mom I knew the first few days would be rough with early mornings and bedtimes and just the general adjusting back to our norm. Weston struggled a lot more than I anticipated though. That first day back to our homeschool routine was a disaster. So much so that we just didn’t finish school that day. He was in meltdown mode trying to make it through the transition. At one point every book on our entertainment center was ripped off the shelves and thrown in the living room floor. By the end of the day we were both mentally, physically and emotionally exhausted. I knew I was going to have to make a change and bring more structure back into our schedule but I was at a loss and not thinking clearly. My goal was just to make it through the day. I reached out to a friend of mine who also has kids on the spectrum and she reminded me of visual schedules. DUH! I had just told another friend of mine about how helpful they are but we hadn’t used one in so long that the thought didn’t even cross my mind. So I wanted to share with you guys exactly what a visual schedule is!

Weston has used one before but I stopped using it because he didn’t seem to need it anymore *insert eye roll*. If it ain’t broke don’t fix it! After talking with my friend and looking over what they use, I went to Mardel and got a few things I would need and set out to create our new visual schedule. It’s almost exactly what she uses so ALL credit goes to Breanna Akers! Girl you rock! Thanks for being my sounding board and reminding me to go back to basics!

So a visual schedule is just a series of pictures that make up their schedule. It gives them a visual representation of what’s coming and what activity they should currently be focused on. It sets up expectations and helps keep them on track. They can be as simple or detailed as you want to make them. For us, I lean more towards detail in this season we are in because Weston is struggling to stay on task and focused. I also am using a reward system, which should be a desired activity or two, to keep him motivated.

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This is his actual schedule. It includes a Morning row, School row, Afternoon row and an eventing row. The horizontal clip will move down as we go from one time of day to another. The vertical clip will move to the right as we complete one task for that time of day and move on to the next one.

This is his chore pack. It has pictures inside of it that help him remember what exactly he should be doing. It clips on his shirt so he always has a visual of the tasks he is doing wherever he is in the house.

The smile strip is a visual behavior chart that we will use during school. He has the opportunity to earn tickets but he can only earn them if he is on blue or green. If he moves to yellow, he has the opportunity to move back to green or blue when he corrects his behavior. Red is reserved for distructive behaviors like tearing up his papers. Hopefully we will rarely have to use that one!

a9291360-f154-4241-9d9d-8f2d82a4767416f710f0-d26e-4abb-b55f-56c22fa52ec7These are his charts to show how to earn tickets and what he can use them for. He has the opportunity to earn five tickets a day for his basic schedule. Each ticket equals 10 minutes of screen time which is his desired activity. He can also choose to earn extra tickets by practicing his awana verses, reading for ten extra minutes or helping with laundry and dishes. Total he can earn an hour and half on his free time activity of choice. If he chooses to read for ten extra minutes he will move that picture over to remind him what he is supposed to be doing. Once complete we will move that earned ticket over to the designated pocket. When he is done earning tickets for the day he can use his tickets for the iPad/Xbox, a movie or a t.v. show. Whichever he chooses, again he moves that picture over. I’ll start the timer and he gets to do his thing for his earned amount of time.

It sounds complicated and like a lot, and it probably is, but it works. Like I said before, we’ve used these in the past and things worked so smoothly. He could clearly see what he was expected to do and there were no surprises in his schedule which minimizes meltdowns! It also helps promote autonomy for him which requires less nagging and reminding from me! Win/win! These types of things are what I call Autism 101 because it’s one of the first things you learn to do after diagnosis. We had been having smooth sailing for a while and so this last episode completely threw me for a loop! I know the next few days of getting back to using our schedule will be rough. He will push the limits and try to see how far he can push his boundaries. As with all things autism, it’s all about consistency. Once he figures out that this is what I expect and that things go more smoothly for him, it will get better! I’m so thankful for these types of tools and friends that remind me I’m not alone in this and remind me to go back to square one when I need to!

-Jess

Miss Independent

I’ve been meaning to write this one for a while now, but I’ve also been avoiding it. It hurts my heart to think about and I’ve been sifting through emotions trying to get it out. In the process I’ve talked to several people who have a sibling with autism. The general consensus is, they wouldn’t change the autism, but they have sacrificed because of it. 

Kalli and I have had several heart to heart conversations about this and she’s confirmed what I already knew. She feels slighted some days. Most days probably. But she understands, so she just deals with it the best way her 12 year old brain knows how. For me as a parent, that’s not good enough. 

We didn’t expect her to come when we were so young. We definitely didn’t plan it, but she literally is the reason  we are a family. Because of her, we’ve had ten years of good memories and laughs. She has grown from a beautiful baby, to a silly little girl and now a beautiful and graceful young woman. I don’t deserve her understanding or the grace she gives me everyday. But let’s get real here. She’s hurting. She feels left out. Sometimes she feels like we love Weston more than her. I can tell her all day long that it’s not true, because it’s ten thousand percent not, but that doesn’t sway the emotion. Words don’t change how we feel sometimes. 

From the day she was old enough that her little personality started to peek through, she has been such an incredibly independent person. She never wanted to sleep in my bed as a baby. She wanted her bed, with her head on the left side of the crib, her stuffed animal and the blanket over her face. When she was old enough to hold a spoon, she didn’t want my help anymore. Once she started walking, she wanted to get where she was going without holding my hand. That’s just who she has always been. So when Weston came along and demanded more of our attention, we fell into what seemed to be a natural dynamic. He required our attention and she was independent. I forgot to take the time to ensure she was ok. To check in with her more often than I thought she needed. To climb in her bed with her just to chat. During the early days of Weston’s diagnosis I was exhausted by the end of the long days after not sleeping. I welcomed my bed and hurriedly tucked her into hers. I didn’t take the time to see how her day was. To hear about the events that happened at school. Even though it was kid drama it’s important to her. I’m her momma, I’m supposed to be her sounding board and I haven’t been a very good one. 

The other day we were sitting at the kitchen table and she said something that absolutely shattered my heart. “Yeah when I’m sick you tell me I’m fine but when Weston is sick you always make sure he is comfortable and spoiled.”  I didn’t mean to do that. I didn’t mean to show favoritism. There is no favoritism. I love them both with every single ounce of my being, she’s just easier. I never had to worry about whether she would grow into a successful and thriving adult. I never had to worry about whether she would be considered the weird kid. She had all of the social skills she needed and she is so incredibly intelligent and gorgeous. I mean the girl never even went through that weird awkward phase we all seemed to drudge through. The things that crossed my mind in regards to Weston’s future were never even a blip on the radar for her and because of that I dropped the ball. 

I always try to talk about the good things; the progress and positive side of autism. This isn’t one of those. This is the hard stuff. The raw stuff. The real side of things people don’t talk about. By making sure my autistic son had what he needed, I neglected to make sure my other kid was okay. That’s not okay. 

I’ve really been fighting the lie Satan has been feeding into me that I’ve completely failed her as a parent. That she is completely screwed up because of me. I KNOW that’s not true and I pray words of life over her and our relationship daily. But the thought lingers. Never in my entire life would I ever want her to feel like she is less than, not enough, or too much of anything. I know God’s grace has this covered and I pray He would keep a reminder in the forefront of my mind to never make her feel a single  ounce less important than she is. Her knowing her true worth and value can only come from Him. I just pray that He would give me the insight and tools to instill that in her. To make conscious decisions to remind her daily. To take the time to spend one on one time with her because it’s so important.

I know I’m not the only special needs mom that deals with this. It’s so common. Every one talks about the mom guilt, but there is so much more to it when you’re fighting to keep a balance between a child who requires more of you than another. So next time you say your prayers, please keep this one on your list. It’s a tough battle full of heartache and guilt. None of which are from God. We KNOW this and yet we fight daily. 

-Jess

Scrambled Eggs

“Mommy, my brain feels like scrambled eggs”. That was the first time Weston was ever able to verbalize to me how he was feeling after an intense day. Nothing that day was going well for him. The house was too loud, the sun was too bright coming through the curtains, his clothes were too scratchy. He had all of this stimuli that he processes so differently than you and I and he just couldn’t regulate. When days like this come up, one of two things happens. He either shuts down and gets into the smallest, tightest ball he can manage, or he completely melts down. We usually don’t know which way it will go and it feels like you’re watching a bomb. You know it’s going to go off, but you don’t know when or how bad the damage will be. It’s usually a meltdown. From the outside looking in, it looks like he’s throwing a fit. Screaming, yelling, kicking, wailing and gnashing of teeth. The thing is though, he’s not throwing a fit. He’s doing whatever he thinks will help his body regulate and process all of that stimuli that is pouring in. Think of a cup. When you pour water in, it can only fill up so much before it spills out over the top. The same thing happens with us. The difference is, we know that we can’t kick and scream in public, so we click our pens, twirl our thumbs, or tap our feet. But because he doesn’t understand that socially it is unacceptable to act that way and that there are other ways to counteract those feelings of being overwhelmed, he does whatever he feels will work. His brain doesn’t know any other way. That is why I’ve learned to have so much grace and offer support when there is a kid screaming in the store. Guys you just don’t know. Yes, they may be throwing a fit because they didn’t get their way, but they may be fighting a battle that you can’t see. It’s not our judgment call to make and I can testify how utterly gut wrenching it is when someone comments about him throwing a fit and needing a spanking. This has happened, from a stranger. It took every ounce of my own self control not to ram my basket into her ankles. But trust me, even if you don’t say anything, that mom sees your sideways judgmental glances and pursed lips. She sees you, and she wishes you couldn’t see her. That was a little off topic, but just give grace guys. It feels embarrassing and there will be a day when your little one makes you want to disappear in public so be encouraging instead of annoyed.

I really wanted to talk about Weston’s perspective on his Autism, so I asked him a few questions. I wasn’t really expecting much because although he’s gotten better at verbalizing his emotions and feelings, we still don’t get much more than a stare and a shrug of the shoulders. I was really surprised by some of his answers though. I asked him how he felt when we first told him he had Autism and he just said he was sad because he already knew he was different than the other kids his age but he didn’t know why. The thing that upset him the most in the beginning was that he would have autism forever. Talk about heartbreaking. I didn’t want to go any further because ignorance is bliss I guess. I pushed through though and I’m so glad I did. He said sometimes when he is playing with his friends, he gets really irritated and can’t control his “angry” when he asks them not to do something or to stop doing something and they don’t. Ya’ll that was his ONLY answer for what challenges he thought autism brought him. I really expected to hear all about his sensory issues with things being too bright and too loud, but nope. He doesn’t like that he has a hard time controlling his emotions around his friends. He gets worried that he hurts their feelings or upsets them when he has outbursts. Guys that’s empathy and that’s HUGE for someone with autism.

He made it a point to say that he thinks his autism helps him remember his schoolwork better. He attributes his ability to learn and remember all of these crazy facts to his autism too. **Quick side note: his favorite fact is that there are turtles that breathe out of their butt. He will tell anyone who will listen and he wanted me to write that down**. I talk a lot about the challenges that he faces, but it’s important to me that you know it’s not all bad. The creativity he has blows me away. He looks at things so differently than we do and he usually applies things that he is fixated on into everyday life. When he’s hungry he will tell us that his hearts are low (like the health hearts in his video game). When he’s hurt he tells us that his health is low and he needs a med kit. Usually a Band-Aid or a kiss will suffice. We were always told that he would struggle with abstract thinking and in some areas he does, but when it’s something that interests him, abstract thinking becomes a breeze. We’ve learned to use that to our advantage. If he needs to eat more at dinner all we have to say is that he will get extra hearts if he eats a few more bites and he does it. It’s all about creative thinking and strategy with him.

I did ask him how he felt when situations came up that caused his sensory issues to come out. He doesn’t like loud noises or bright lights. As he’s grown older, the level of reaction has decreased, but it’s hit or miss. Sometimes he will be fine, other times he needs Travis or I to cover his ears or head. Worship service on Sunday mornings is usually the worst time for him, but even then he’s learned to cope. He said that when he gets in his little ball and I have my hands over his ears or he puts his headphones on that he thinks about “sorting things out and working on his projects”. He’s learned to cope with things in a more socially acceptable way and he just distracts his mind from it and focuses on something constructive. We never taught him that. It’s something he’s learned to do on his own as he’s gotten older. I know as he gets older he will have to learn to cope without distraction, but it’s one of those areas that we will cross that bridge when we get there. In the meantime we work diligently to teach him little things to help him get to that goal. I cannot begin to tell you the many doors that God has opened for him. Things that should have been such a struggle, God has shown us an avenue that makes it easier. When we know something new is coming up God always seems to take care of it before we get there. It has been amazing to sit back and recount all of the things He’s done for us over the last several years. He’s worked insurance issues out in a few days when it should have taken weeks. He made a way for me to be able to homeschool him and it not be as difficult as we were told it was going to be. He put people in our lives that have walked this road and can offer so much advice and testimony to what worked for them. And ya’ll he gave us this amazing tribe of people who see Weston’s heart. The openly embrace him and all of his quirks. They accept his one thousand and twelve hugs he wants to give when he sees you. They pray for us and send us words of encouragement when they know we are going through weeks of long days and little rest. They correct him in a way that doesn’t break his heart but sets him on the correct path. They love him. That has been of the most value to us.

I really expected a more negative viewpoint from him but he sees everything through such a positive lens. It absolutely blows me away every single time. We have talked and discussed that God created him to be exactly who he is, autism and all. He knows that he is so much more than a disability. He knows God created him for a special purpose and regardless of what might come up, God knows what He is doing in Weston’s life. Obviously he’s grasped that more than I have because as a mom, I still struggle with packing that uncertainty back on my shoulders. That’s something I try to work on every day. Sometimes I fail and sometimes I’m able to hand it over to God the moment the thought creeps up. I’ve had so many people ask if they can pray for healing over Weston. I’m one hundred percent ok with that and if that is what God chooses to do in his life and I truly believe God is a healing God, I would be elated. What a testimony that would be! But I also know that if He chooses for Weston to walk this out the rest of his life that He will be faithful to continue to open those doors for him. He will continue to provide a way when we see no way. He is just amazing like that. I know there will be more scrambled egg days, but I also know that he will get through them. He works hard and he believes wholeheartedly that God created him for something big. I believe that too. Even on the hard days I choose to have hope and believe that God will use Weston’s experience to help others on their scrambled egg days.
-Jess

The beginning:Missed milestones. Regression. Guilt. Grieving. Acceptance. Hope

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There are so many things I could say about the beginning of our journey with Weston’s autism and I’ve shared some of it with those of you that are friends with me on facebook, so bare with me if you’ve heard some of this before. When I was a little girl I told my mom that I thought I would have a child with special needs. I had no idea what I was talking about or where that even came from, but I truly believe God started preparing my heart for this journey early on in my life. Getting Weston here was a struggle. Travis and I were young parents when Kalli was born. I got pregnant at sixteen and had just turned seventeen when I delivered her. We got married in June right after we graduated high school. We always knew we wanted more kids, but we just weren’t in a position yet to do that. Then I got pregnant unexpectedly. Even though we weren’t prepared or trying, we were elated. But our excitement was short lived when I had a miscarriage just a few weeks later. We decided then that we wanted to start trying for a second one. It just didn’t happen. Finally, almost a year later we found out we were pregnant again, but again suffered a second loss. We were broken, angry, and just tired so we decided to take a break and consider our other options. Not even a month after the second miscarriage we found out we were pregnant again.This time we waited and didn’t tell anyone until that first trimester was over. We wanted to be excited but we were terrified to have to walk that road again. So we waited, and we prayed. My pregnancy was hard and long but he was a fighter and he stayed put for a long time. I tell you all of this so that you know how much of a miracle and joy he is to us. God used him to heal a part of our hearts that had been broken. God taught us so much through that time. We learned to rest in Him and trust that he would be faithful to give us the desires of our hearts. It was one of the hardest things we’ve ever done, but God WAS faithful.
I went into labor at 20 weeks and I was basically on bedrest until he was born at 34 weeks. That’s a lot of time to sit and think. I knew something was different even when I was pregnant. I had never laid eyes on him except over a monitor, but I knew there was going to be something different about our little rainbow baby. I don’t know why or how, but again I think God was preparing my heart even more for what was coming. Finally on February 23, 2011, my water broke and Weston was born on the 24th. He was perfect you guys. Absolutely perfect. Because he was so early, his lungs weren’t fully developed and they sent him to the NICU in Odessa via ambulance. I only got to see him twice and I never got to touch him. He was almost 48 hours old before I ever got to feel that soft baby skin and even then we couldn’t hold him. I had postpartum depression with Kalli so I was so afraid that the lack of contact would bring that monster back for round two. We prayed every day that God would keep everything balanced and He did. Still, I knew something was just off. That is literally the only way I know to describe it. I remember looking at this perfect little baby, hooked up to all of these tubes laying under little lights and I just prayed that whatever this feeling was that God would take care of it.
Fast forward a few weeks and Weston finally got to come home with us. We were elated. Those first few months were perfect. Our family was complete and we could not be happier. Then things started to change a little bit. He stopped sleeping. I’m not talking normal infant, waking up every few hours to eat. I’m talking the kid never slept. We would go days upon days with no sleep at all. No naps. Nothing. Looking back I have no idea how I functioned. God definitely had His hands all over that. As he grew I started noticing other little things. He was hitting all of his milestones on time as far as talking and crawling, but he wouldn’t walk at all. He didn’t take his first steps until he was around 18-20 months and all of the other developmental milestones he had hit were gone. He had previously been talking and saying the normal things like “mama, dada, cup, more” and one day he just stopped. He didn’t start talking again until he was almost two. When he did talk it was weird. He would call me Jess instead of mama. That’s something people need to understand as well. Autism doesn’t present itself the same for every kid. Some kids hit normal milestones and then regress. Others don’t hit those milestones at all. It just depends on the kid. But because he was developing at a “normal” rate, when he started regressing, I thought I had done something wrong to cause it. I mulled that over in my head all day everyday. I worked with him incessantly trying to get him to progress and it just wasn’t happening. He cringed when we touched him. When people would come over he would crawl to his room and shut the door. He just wanted to be alone in his room away from the noise and crowd.
His first birthday is when I finally said something about there possibly being something not right about his development. All of our family was at our house to celebrate his birthday and he wasn’t having any of it. He screamed 90% of the time and kept going to his room and shutting the door to get away. Anytime I mentioned my concerns to anyone I was always told “he’s fine” “he’ll grow out of it” “he’s just a boy” “ don’t compare him to Kalli, all kids are different”. So I continued to ignore it, but for years that nudging on my heart stayed.
As he got older, I kept noticing other little oddities that just didn’t sit well with me. Anytime we were in a noisy place, like the store or church, he screamed. I’m not talking throwing a little kid fit, I’m talking screaming until he couldn’t breath. And the rocking. This kid could shake the car when we were going 70 down the highway. It was constant. He was frustrated. I was frustrated. Travis and I were fighting. It felt like our entire house had imploded and we were about to just crumble. By this point we had moved back to Andrews and Weston was three. I enrolled him into Mother’s Day Out thinking that maybe he just needed some extra structure and socialization and things would be fine. They weren’t. Nothing changed. Finally one day, his teacher pulled me aside, and I could tell exactly what was coming. She told me she didn’t want to offend me, but that she had worked with kids who were autistic before and she saw a lot of those symptoms and tendencies in Weston. He wouldn’t play with other kids at all. He just sat by himself. He wouldn’t play with toys the way kids typically play. He lined them up by color and size. He wouldn’t roll cars around like they were moving on a road, but he would lay with his face on the ground and watch the wheels go round as he moved it back and forth. The ladder on the firetruck wasn’t used for the little people to save the pretend home; he just raised it up and down over and over. When she said that to me, I had such a rush of emotion. I wish that I could put into words what I felt. I was sad, but ya’ll the relief that my momma heart felt was indescribable. Someone else finally saw what I was seeing. Someone wasn’t making excuses for this behavior anymore. I got him in my car, sat in the driver’s seat and just cried. My mom was with me and she just encouraged me to do what I thought was best regardless of what anyone else thought. I decided that day that I was making an appointment with his pediatrician to discuss it.
People were not happy. I cannot tell you how many comments I got about labeling him and how awful that would be for him as he grew up. Blah blah blah blah. Travis and I were not in agreement at all. I think there’s a difference between moms and dads. Moms see something off with our kid and we jump straight into momma bear mode and do whatever we can to fix it. Dads need a little more time to process things. I’ll talk more about this in another post, but that’s just where we were at the time. Let me just say that I’m not the wife that would go against what my husband says. He is the head of our home and I respect him in that way. We talk and discuss things until we can come up with a mutual decision and if we can’t, I respect his position in our home and I back off. I didn’t this time. I couldn’t. Something in me just could not let this go. So we went to the doctor, he gave us a referral to a pediatric development psychologist and she got us in within a few months.
Those next few months were grueling. Things were progressively getting worse with weston’s behavior. Travis and I weren’t even on different pages about this, we were in two totally different books. So we were fighting constantly. It felt like mass chaos all the time and I was feeling so guilty about so many things. Guilt over my marriage being in shambles, my daughter feeling like she was being put on the back burner, not doing something for Weston sooner, not knowing what to do for him now. I was a hot mess. And we still weren’t sleeping. Three years of not sleeping you guys. Three long exhausting years. Finally the day came for our appointment with the specialist. We were in there for almost four hours. She asked questions, observed, asked more questions and decided she couldn’t make a diagnosis she was comfortable with. Come back in six months. Ya’ll I wanted to cry. I did cry. A lot.
Again, those next six months drug on. It felt like years. At this point Travis and I weren’t talking much at all. Unless it had to do with one of the kids, there was zero communication between us. One day I just broke. I had been praying God would help him support me in this, but it just wasn’t happening. Not fast enough for me anyway. What I failed to realize was that I wasn’t supporting Travis. I was so focused on just making it through the day that I didn’t realize Travis was experiencing the exact same emotions and fears I was. They just presented differently than mine did. God really nailed me on that. The day I broke down and just poured all of this out to him and apologized, things started getting better. Not a whole lot better, but at least he agreed to go with me to that second appointment, because up until that point he wasn’t going. This was my thing that I brought on and he didn’t agree with me so he wasn’t going. Let me pause for a minute to make something extremely clear. Travis is not the bad guy here. He’s a father who loves his kids unconditionally. His heart was broken. He was afraid of what the future might hold for our son. He was grieving. People don’t realize that there is a grieving process that you have to go through with something like this. It sounds weird and funny, but it’s true. It’s a dark lonely place.
Fast forward to April 2014. Our second appointment was here and we spent several more hours of answering questions, filling out paperwork and observing. Going into that appointment I was fairly confident that we would walk out with a diagnosis of ADHD and possibly autism. Nope. Just Autism. I cried. Again. She gave us a bunch of pamphlets, orders for speech therapy and a bunch of numbers for speech pathologist. I cried more, Travis was quiet, and we left. I was so upset that my son would have to walk this road. Knowing the things he could possibly struggle with his entire life. Not knowing how difficult things would be for him. Not knowing anything to be honest. I had done so much research during those months that we waited, but you can’t research your child who hasn’t been through those things yet. I knew our experience would be unique because it’s different for everyone. I was sad, scared, but relieved.
His specialist gave us different things to try to help him sleep at night. The first few nights we tried sleepy time teas and a bunch of other stuff. Nothing worked. I didn’t want to medicate him unless I had exhausted all other possibilities, so I decided to try the melatonin she suggested. Ya’ll. That night, I felt like God himself had parted the skies and come down into my home and given me the most glorious night of my life. Not even kidding. He slept through the night for the first time in his entire life (he was four at this point). It was amazing.
The next few months were a still chaotic but things were getting better. Travis and I were communicating more. Speech therapy was helping and they were giving me ideas and tips to help manage at home. We worked so hard and so often to help him. Things were seriously looking so much better. God restored so much for us in that following year. It hasn’t been all rainbows and butterflies since then. We’ve definitely had our ups and downs. As Weston has grown we’ve run into new challenges and difficult things we’ve had to learn to navigate and again, I’ll talk about those things in future posts. But what I learned through this entire process was that God was faithful in it all. There were days I honestly didn’t think I would make it through. I thought I would end up divorced, splitting my time with my kids, struggling and sleep deprived. God took all of that and He made it all new. He took the guilt I felt about not doing something sooner. He took the fear about what Weston’s future was going to look like. I mean I think about that everyday in different aspects, but the difference is there is no longer fear there. I know God has this in His hand. It’s already planned and even if it’s difficult and I feel like I’m going to break, I know it’s already finished. God’s already worked it out for His glory and that is all I could ask for. That God would take our story and use it for His glory. I don’t have control over what that looks like, but I do know when he lays something on my heart I have to be obedient to that so He can work. That’s how this blog came about. I don’t know why I’m doing this, or if anyone will even read it. But I do know I had several people who held me up during the most difficult days. God used them to keep my head above water. If I can do that for just one other momma or daddy, I’ll write until God takes me home. There are too many of us who have walked this road for us to feel like we are in this alone. I don’t know who this is for, but if it’s you, sweet friend, know I’m here. Fighting with you. Praying for you.

-Jess

Well Hello There!

Well hello there! I’m glad you’re here! I’m Jessica, wife to one, mother of two, homemaker, teacher, short order cook, chauffeur, launderer, and pushing thirty this year. I’ve had this pull to write a book for a while now. It started as a children’s book, but it just wasn’t sparking anything for me, so I decided to write a memoir of our life raising a child with autism. He’s only seven and our road has a lot of miles left so I knew this was going to be something that was ever growing and changing. I didn’t want to put a period where there should only be a comma. I don’t want to bore you with facts and flood you with information, I just want to give a glimpse of what it’s like being a parent or sibling to someone with autism. Please realize that this is strictly our experience and opinion based on what we have lived day in and day out. I in no way want to give the perception that what autism looks like for us is how it is for everyone, because it most definitely is not. There will be a lot of funny stuff, because Weston is just funny, but I’ll also be talking about some extremely emotionally charged topics, for me anyway. You may not be able to relate on a special needs perspective, but I promise it’s not a whole lot different than parenting in general (maybe a little), and most of you can relate to that! If you’re not a parent then read anyway, it’ll give you a five minute break from whatever you’re working on and it’s way better than candy crush.

Good company in a journey makes the way seem shorter. — Izaak Walton

 

The Great Debate: Let’s just get this out of the way

I know I said I wasn’t going to throw a bunch of facts and information at you, but here is a bunch of facts and information. ONLY because I know there’s going to be at least one “Martha on a Mission” who just HAS to get her two cents in and tell me all of the things I could do or should have done differently. I still love all my Martha’s, very much so, but I’m tired of that conversation. So here is where I stand on it.
There is a common misconception about people with autism. Some don’t fully understand that it is a spectrum disorder, which means it looks different for each individual. Autism is a mental condition that presents itself early in childhood and can cause an array of different symptoms. Some of the most common symptoms are difficulty communicating and forming relationships with other people. Often times a person with autism may struggle with sensory issues and abstract concepts as well. No two people with autism are alike. Their symptoms can range from non-verbal and learning difficulties to highly intelligent and hyperactive. Dr. Stephen Shore said it best when he said, “If you’ve met one person with autism, you’ve met one person with autism.” It truly varies depending on the individual. Unlike a lot of other conditions, there is no set of rules or symptoms that you can check off and diagnose that way. It involves interaction and observation as well as a truck load of paperwork from parents and teachers.
As far as what causes autism, there are no clear cut answers. Everyone has a theory, an idea of what they think causes it, but the truth is, we have no definitive answers right now. There are so many falsified studies out there that claim they found the answers.Some have even admitted that their studies gave false information, and yet people still swear its the truth. It’s MSG and pesticides in our foods, vaccines, gluten, the gut, mom’s diabetes, genetics, brain development and so many more, but none of which are conclusive and show causation. Don’t believe everything you read online, or what your Aunt Susie’s neighbor said about her great nephew’s ex step kid. Seriously, no one has answers right now, and until then we continue with therapy and appointments, lots of therapy and appointments. And paperwork, did I mention the paperwork?
Anyway, I digress. My point here is that 1.) it’s different for everyone 2.) no one knows why. I say all of that to say this, I will not ever, under any circumstances debate or argue with you over these topics. Also, if you believe one of those theories, power to you man! I don’t. And most autism parents don’t either, so please don’t push that on us. We know about all of them. Trust me, we’ve had strangers who don’t even know us tell us we could have prevented this had we not eaten msg while we were pregnant or vaccinated our kids. We’ve gotten really good at gracefully (sometimes not so gracefully for me because this mouth) bowing out of those conversations, but we already carry so much with us, please don’t add more to it. We know that 90% of advice and information givers are just trying to help, and we love you for that, really we do. I’m not going to tell you that you could have prevented anything in your life had you changed your habits. It’s rude, and it’s unnecessary.  We are already here anyway, and if there were any preventative measures we could have taken (and there’s not), it’s too late for that now. Instead, just ask how we are doing. Pray for us. Pray for our kids. Include us even if we are a little weird, you’ll laugh a lot. And ask questions. If you don’t know, ask. We would be so happy to answer those questions, I promise. The day our kids were diagnosed, we all signed an imaginary contract to inform and educate the world on autism, so it’s ok. And PLEASE don’t think I’m a crotchety lady, because I’m not…usually! I’m just tired of the debate. Keep sending me all of the articles ya’ll send me discussing different perspectives and tools regarding where we are now! I love those and I love you!

-Jess