I need to vent about me..

Internet: I need to vent. 

I feel like I have no close friends anymore. I can't decide if I've pushed everyone away because I say things that some consider abrasive, but honest... or if I am simply not a great friend to have. I feel like I'm a total failure at being a friend, because I'm extremely socially awkward. I never know if sharing my own personal experience is me being self-centered or helpful. I don't mean it to be selfish, but I am always worried I'm coming off that way. No one wants to share feelings or get advice from someone that is self-centered and certainly you don't want to befriend someone that doesn't have much to talk about. 

I have no freaking clue what to talk about! I am terrible with small talk and create massive amounts of awkward silence. I'm like, woo go sports team (I hate sports) and how bout that weather.. and I'm done. Everything else is stories from years ago, my children, whatever television show I've recently seen (which is rarely a trendy show) or a book. Riveting, right?  I could totally own a party. Is that even a trendy thing to say anymore, own? Is trendy even a trendy thing to say? ahhh!! 

So, yeah, I tend to just avoid everyone. I don't want to upset anyone with the things I observe, feelings I have about things, concerns I have about their lives, and I fear that everyone is absolutely sick of hearing about my children, their school, our struggles and how much my ridiculous chronic pain and anxiety keeps me from doing.  I feel like I am a complete failure at life. I want to do more and have friends ... I really do... but how do I even make that happen? I struggle to talk to the people I already know. I fear that people are either faking nice or plotting evil...or both. I know some of it is projection because I feel like I'm a joke, but I've actually had both things happen. Doesn't mean that everyone is bad... I tend to find those that are. 

I guess, maybe, I expect too much? I want to befriend people that are more like me than not like me. It's hard to find. I have things I can't stand to deal with like people that use people, racist people, thieves, compulsive liars, Trump or Hillary supporters, people that don't believe chronic pain exists, people that think autism is caused by vaccines or bad parenting, people that think depression is just something you get over or shake off, people that think if you pray hard enough or want it bad enough you can get over your disease/disability and work, people that think if you can't work then you are lazy,  and of course people that make fun of those with disabilities. 

Seems like a little too much, I guess. So here I sit with my autistic children wondering if I will ever have a friend I can hang out with and go have lunch with... or have a chill night with. I have my husband of course, but I'm sure he gets sick of me, too. I get sick of me so why shouldn't he? :p 

thanks for listening, internet. 

A Personal Essay: My Cross Country Journey to Washington State.

It had to be done, right? It was a life changing decision, but it was what was best for the family. Yes, we had to do it. The choice had been made. We were moving across the country to Seattle.

It was a hot and humid August day in Terre Haute, Indiana. My husband, Josh, and I were standing in the Kroger parking lot, trying to get groceries in the trunk of my old, rusty Buick without throwing up. The smell of the dirty Wabash River and the paper mill were combining to create something putrid. This odor was a common occurrence, especially after a summer rain shower. Once we successfully got the groceries in the car, I drove us home so we could again battle our sense of smell and gag reflex to bring the groceries inside our even hotter, tiny, apartment upstairs.

Josh and I walked into our apartment building to be greeted with the pungent aroma of what we assumed to be crack. Our downstairs neighbor had his door propped open, offering everyone a show of him and his friends smoking a glass pipe. He noticed our surprised looks and happily offered to share. I was, very obviously, nine months pregnant. Clearly, this guy was intoxicated. We politely declined and continued our journey up the stairs. Once we were safely in our uncomfortable apartment, Josh received a phone call from his rather frantic mother. She had heard there was a man stabbed to death in the park near our home. I could understand her concern; only a few days earlier, three houses down from us another man was shot and killed. After assuring her of our safety and chatting for a bit, they ended the call in happy spirits. Josh and I then started discussing the unfortunate series of recent events, and how we would love to get away from this grim city. We reminisced about bonding over our mutual love for Seattle and grunge music. We decided that it would be a safer environment with more opportunities to live there. I suggested we leave as soon as possible.

Three days later, I had handwritten directions in my favorite spiral notebook, and we were packing what we could fit into the bed of Josh’s small Dodge Dakota truck. Josh put in and was approved for his job transfer to Bothell, Washington. I had returned the key to our undesirable apartment and begrudgingly sold my old Buick. We said goodbye to Josh’s parents and started our pilgrimage.

Our journey took us through many exciting places and experiences.

I wanted to get us to the Seattle area as quickly as possible, but I couldn’t help stopping at rest stops and taking in the beautiful scenery. In Nebraska, during the early morning hours, we decided to take a break to enjoy breakfast at rest stop; we watched the sunrise over a breathtaking landscape. There was also a large replica of a Teepee. We, of course, had to take our pictures there! I had to remind myself we were on a time limit, so we couldn’t stay longer, in spite of the magnificent view.

Once we were on the road again, we needed to find a hotel or motel to stay the night. My pregnant body was not handling the drive well. I needed to give my legs some elevation and rest. We stopped at a dozen or more places, but all were booked because of the Sturgis Biker Rally. We kept driving into Wyoming. We were running low on gas because the area we were in was not very populated. We began praying fervently that we would make it to a gas station. I don’t know if we made it by answered prayers or great luck, but we finally found a small town hidden amongst the magnificent mountain valleys of Cheyenne, Wyoming. They had food, a gas station, and a lovely hotel with a vacancy.

After a night of much needed relaxation and a shower, I was eager to get back out on the road. I was afraid I would go into labor before we ever made it to Seattle. My legs and feet were so swollen that I could not fit my feet into my slip-on sandals! I was also having Braxton-Hicks contractions. Our baby was kicking and flipping like a little gymnast. Josh, sensing how scared I was, checked the water levels on the truck and secured our load. We spoke with the hotel attendant, while we enjoyed our complimentary breakfast. After he noticed the license plate on the truck, he was quite curious what we were doing so far from Indiana with me being so far along in my pregnancy. We shared our story; he kindly offered us good luck and some extra breakfast to take on the road, both of which we gratefully accepted.

The next portion of our excursion took us up through many desolate, yet gorgeous mountainous areas. Nature's own tapestry during the day was simply stunning. There are not enough words to describe the multiple hues of the mountains, hills, and wide valleys, or the blazing sunrise and luminous sunsets on seemingly untouched land. We took numerous pictures and appreciated every bit of this unique scenery.

As night quickly fell, we grew profoundly concerned at the sudden appearance of an informational sign pointing us to a pull off area to attach chains to our tires. We had finally run into a situation for which I had not planned. During all of my meticulous planning, I never thought that we would possibly need tire chains. Again, we prayed our way through; by luck or answered prayers, we made it through without them. I must say that for me, driving on mountainside roads at night was an exhilarating and intimidating experience. We had no cellular service through most of those areas, Josh was sleeping, and it was just me and my music. I rolled the window down and sang to myself in an attempt to stay calm, collected and focused. It worked quite well, and we made it safely through the night.

At midday, we happened across a unique rest area in Idaho. I can’t recall the name at this time. There were adorable chipmunks and prairie dogs that would eat right of our hands. I thought they were the most adorable little creatures I’d ever seen. I ended up feeding them the last few pieces of bread we had. Josh met a guy that was homeless and trying to make his way back east. They chatted for a bit, while I took a nap on a picnic table. Josh, being the sweet, caring soul that he is, gave this guy part of what little cash we had. I, naturally, freaked out. Josh assured me that it would all work out because we were being watched over and taken care of. Looking back now, he was very right. I was grateful we were nearing our destination because our cooler was leaking and our food supply was nearly depleted. After resecuring our load and saying a sad goodbye to our friends, both furry and non-furry, we left.

We were nearing the Washington state border and joy was filling the truck. I was determined not to stop until we crossed the border. As it happened, we did make it over the border, but we immediately had to stop for gas. As soon as the truck was in park, we tumbled out, embraced each other deeply, and shed a few tears of happiness. We had made it to Washington State! A not-so-flattering picture of us being hot, sweaty, and tired was taken. It’s still a favorite of mine; in that moment, we felt so triumphant!

The last few hours of the voyage seemed to crawl interminably. As I saw the sign for the area of Bothell, I nearly broke into tears of joy. I had to maintain my composure so I could see to drive. After getting a little lost, we finally reached the building we were searching for, Hope-link. We went in to discuss with them where we would be staying until Josh made it to his job the next day. They provided us with a motel room for a couple of days. It was wonderful to finally feel like I was in a safe place with a bright future. It made the entire journey worth it. Every ache, pain and swollen limb...completely worth it.

Traveling across the country served as a starting point for a variety of experiences, hardships and adventures in Washington State. Our expedition to the Seattle area is one of my most treasured memories, as it completely changed my life and my outlook. I am a stronger, more confident and far more resourceful woman as a result. I found myself in difficult situations and maneuvered my way out of them. In addition, my husband I created a far more positive life for ourselves. As a bonus, it is also a great adventure story to share!

My Spectrum Life

The life of a special needs parent is intricate. There are many books, but there is no all encompassing guide. Our children lead us on the path while we struggle to educate ourselves as best and as rapidly as we can.       

                            

As a special needs parent of 2 children, I'm aware that the focus tends to be on how rewarding it is to see the world through a different perspective. I, sadly, am, also,  familiar with the people that make me feel ashamed for needing a break, or for feeling exceedingly  frustrated with my situation.  Yes, it is emphatically rewarding to see those marvelous breakthroughs, and being  blessed with a unique point of view is phenomenal but,the less talked about side of this is that it is also desolate.

My daughter, Violett,  is 6. She was diagnosed with Sensory processing disorder at 2 and Autism at 3. We, her father and I,  are currently in the process of determining if she also has ADHD. She  has several therapies and prefers routine.  She prefers the company of adults which limits my personal time to recharge or allow myself to temporarily breakdown. Though, she does have her own set of struggles, she is more straightforward and easier to care for than my son.  

My son, Khai,  is 7 years old. He has Autism, Celiac Disease and Type One Diabetes.  He was diagnosed with Type One Diabetes at 3 years old, Autism at 4 and Celiac Disease at 6. We are in the process of determining if he also has Oppositional Defiant Disorder.   His life is full of routines, special foods, needle pricks, frequent doctor visits  and multiple therapies.  He requires round-the-clock care and attention. This is exhausting both physically and emotionally for he and I.  Thankfully, I have a husband that tends to our daughter, allowing me to spend most of my time focusing on our son.

Life before his diagnosis now seems so distant. Not just because of the increase of medical treatments but, also because my social life and support system changed.  If you thought finding a babysitter was hard before try finding one that is comfortable with Autism, willing to calculate carbohydrates and insulin dosages while making sure everything is gluten-free. I assure you it is nearly impossible as I haven't had a date-night with my husband in years.

 I have no friends that can relate to my daily life. Frequently, people become bored when talking with me. I think, this is because I don't have much to talk about, other than my children,  our frequent struggles, fights, medical visits and school functions.  I find that, I'm commonly behind on whatever the current trend might be.  I can help you with a few Autism related issues, inform you about research studies for both Diabetes and Autism, but I can't tell you anything about a current reality television show or dish out celebrity gossip.

I spend most of my time focusing on educational and medical needs of my children which includes: going to Individual Education Plan (IEP) meetings, updating and reviewing those IEPs, filling out forms,  and speaking with several therapists. My children have mental health therapy, occupational therapy, speech therapy and, on occasion, physical therapy. I, also, speak with the school nurse on a daily basis, sometimes several times per day. I have to make, and keep track of, doctor appointments. I maintain weekly contact with Khai's endocrinology nurse, to ensure he is getting proper insulin dosing. I check his glucose levels ten times or more per day. I must count or measure out his food servings, after verifying his food is gluten-free, of course. After he eats, I add up the total carbohydrate count of his meal to determine his insulin dosage.  I, then, have to coax Khai into allowing me to administer the injection. I don't blame him for fighting it;  I wouldn't want to endure so many shots every day, either. When it's finally time for the children to go to bed, I try to watch a little television or read a book. Even then, I have to continue to monitor that they are sleeping safely, give insulin shots, check glucose levels and treat any high or low Khai might have.  As you can see, I have very little time left to focus on meeting my own needs.

My house tends to stay a little messy because I have a hard time motivating myself to clean when I have a little time to myself.  In my experience, housekeeping is complicated when your children have sensory needs. My children tend to cut, tear, squish, smear, color, write on, and test the boundaries of everything. Now,  I tend to be opposed to having visitors. I have had people judge and insult me for having a disheveled home. However,  I decided that, keeping my house clean is not as important as allowing my children to explore their senses, or giving myself some time to rest.  

It is hard to take my children to someone's house, because they love to touch everything. They love to explore every corner, open every door, rummage through drawers and cabinets.  My children have an unquenchable curiosity, but are also clumsy and sometimes accidentally break things.  They hunger for knowledge, and ask a plethora of questions; leaving little time for adults to converse. After meeting our family, we tend to no longer get invitations, unless it's something someone feels obligated to do.

People, including some family members,  are awkward around my children. Interacting with them can be confusing.  It can be difficult to understand their speech, even when you live with them.. They take things literally. They are still learning about jokes, sarcasm, cliches  and metaphors. I have noticed that, some persons are afraid to treat my children as if they are neurotypical or “normal” children. My children still enjoy a lot of things neurotypical children enjoy.. My children love to play tag and console games. They love cartoons. They tend, only,  to have difficulties when it comes to playing with some toys as they are intended to be used. For example: Violett will gather up toys and shove them in buckets, socks, bags  or whatever else she can find that they fit into.  Khai lines things up, groups things according to colors and shapes. But they still enjoy toys.

Crowds love to stare at us during meltdowns. I have never had anyone offer any kind of help, when my child is having meltdown. Bodies will gather, stare, point, judge, make rude comments, but never do they offer support. I've heard them distantly assert that I need better control over my child. They murmur that they, "wish that child would shut-up."  I have even encountered people accusing me of spoiling my children and bringing this on myself. I, now, dread going out in public. I am terrified that someone is going to emotionally scar my children, because they are so close minded and quick to judge. I wish that people would try to be more understanding.  I never know how an outing is going to go until we are there. A meltdown can be triggered by something you might consider a minor annoyance like a person wearing too much perfume or cologne. It could be triggered by the store not having a specific color or flavor of an item. There is just no way to always avoid it. I do what I can to avoid these things. I am so grateful to be able to shop online for many things, now.  It has been a blessing to avoid some meltdowns.

In closing; I write this not in an attempt at receiving pity, but to encourage others to strive for compassion,  emotional support, and endearment.If you see a parent struggling with their emotional child do not be so quick to conclude they are bad parents or a bratty child. Instead, either offer a kind word of encouragement, sympathy, ask if you can help or just simply don't stare and say rude things.  If someone is feeling outcast,  and trying to share their struggles with you please don't just brush it off, change the subject or send them an emoji.  That person is trusting you, exposing their darkness and hoping you attempt to offer them solace.  Please, do not further alienate those that carry so much alone. A kind gesture, word or even a night out without children can be more refreshing than you can imagine, for someone that is rarely afforded the luxury of enjoying personal time or the company of a good friend.

Holidaze

Rather than enjoying this "most wonderful time of the year" I find myself swirling in a maelstrom of anxiety and confusion.

Do I go visit this person? Do I really believe they care enough that I should risk almost certain panic attacks, insults and possible other bad things? What if this is their last Christmas alive; would I feel guilty for not spending it with them, even though they have caused me so much stress and heartache? Will anyone really even care if I'm not around? Do I really want to risk exposure to other things....

It's insane the things we put ourselves through because it's "just what you do for Christmas". Does it really need to be that way? I don't think so. I think it is fine to only visit those you really want to visit and not be around those that you aren't comfortable with. Then I wonder if I am messing up my children by keeping them away from some of their family. However, if that family treats them as they treated me then I'm doing good for them. It's all a big emotional mess. I also hate that I find myself scared to visit some people over other things that I am not going to mention... but those are things that seriously caused a lot of financial, emotional and physical issues for me. It seems fair... but am I being selfish by trying to protect myself and my children? *sigh* Why can't everything be easy?

I figure no one is going to read this so I can vent a bit here. :)

I have so much more to say but I think those will be for other posts...

Trains, rainbows, music and mechanics... oh my

First: I am a PROUD mother of 2 Autistic children. That has everything to do with what I'm about to post. I want to help you see and feel the world the way I experience it...through the beautiful, blue eyes and deep feelings of my two, strong, incredibly capable, funny,caring, thoughtful,  and all around amazing children.

Recently, I've been seeing a lot of posts about vaccines vs "anti-vaxxers".   I'm sick of people using this as a ground to trash-talk Autism. I am very tired of people saying they don't want to vaccinate their children because they are afraid of them "getting Autism". All I will say to that is: no matter your stance on that be sure you do a lot of research before sticking to your decision, whatever that may be. Autism should never be your reason to not vaccinate.

 I'm also frustrated with people saying "I'm sorry" when you announce your child has Autism. As if Autistic children are lesser beings.. broken, deformed, something to be ashamed of and unloved. How rude and judgmental.  Yes, it is factual that parents of Autistic children do have a longer road and more hurdles.  In the end, I think, that makes it more rewarding. Not only do we get to see how their eyes light up, when they are excited over having a breakthrough but, we are also blessed to be able to see the world in a beautiful way we never even knew existed. It's a shame that so many people can't see that and some don't even want to. If you take the time to get to know an Autistic person, (because, yes, those children do grow into adults) you, too, can see their world. Nothing compares to it.

Allow me to give you an example.

You are heading home after a visit in town. You've grocery shopped, went to the post office, visited your local movie rental store (yes, those do still exist), you and your children are tired. You all just want to go home and unwind.

On your way home, you get stopped by a train. Of course not in the middle or near the end.. it's that situation where the arms are just coming down and the train is still quite a way from the crossing.. ugh.. you think... now this is going to be loud and take even longer. I wish I could just drive around those arms. *eye roll* Am I right?

In your backseat are your two children ever so excited and overwhelmed at the same time.

Now imagine you see all these colors. All these beautiful, bright, colors! The blue sky, the white clouds, the brown trees, the grey car interior. Wow look at those big sticks with stripes and lights! How do those work? How do they know the train is coming? Oh boy, now colors are flying by so fast! Red, green, rusty orange, black, oh yay and pictures on the cars, too?!! Look at those wheels on that train! The way they all work together. How fascinating that each car is connected to the next one. They all have their own purpose.. I wonder what that could be. How are they connected? The horn is so loud. How does it work? It's going so fast with all the cars connected, the wheels are all connected, rolling on the track, how do they stay there, how do they get on the track, how does it go so fast, where is it going, look that car is different...why is it different... the wheels on the train are different than our car... why doesn't the car drive on the track.. why doesn't the train drive on the road... does it run on gas... where is the engine.. I think I need a book about trains.. I'm going to play with my trains when I get home. I want to drive a train someday but until then I want to ride in one. Mommy can we ride in a train?

Now imagine you are feeling the train. You can feel it coming before it is even in front of you. You hear the clacking and the humming. The loud horn blaring. bump bump clack clack...through your whole body. You notice it has a great rhythm to it. It grows louder as it quickly grows closer. Every thump and clack goes through your whole body but does so in a consistent beat while this beautiful rainbow slides by you to the same beat. You are so excited you have to start moving to the beat.. kick kick, rock rock, it's not enough.. you have are so amazed by this whole experience. the feelings, the vibrations in your body so intense you have no words.. you have to express it physically it's almost like you have no control over your own body.. you just FEEL so much... so you MUST tap your head in the same beat against the back of your seat. thump thump, bounce bounce, kick kick... ah yeah that's better. Now maybe some words need to go along with this to try to express how riveting this train music and how beautiful the colors and pictures are. Oh my that's so tiring and all so comforting and zzzzzzzzzzzzzzzzzzzz....

now the train is gone.. the arms go up... and you have a child that's sleeping and one that is so excited he can't speak just yet... but he will... oh how he will later.

Finally, you make it home. Your sleepy little music lover wakes just as you shut the car off and immediately starts bouncing and singing again. Your little engineer wants to start asking you if you saw this picture or that picture on the red car. No? How could you not? So he describes it to you. It sounds so beautiful you can't help but feel a little bad that you were so busy thinking about how frustrating it was to be stuck waiting on this annoying train arrg! Also, you wonder how he had time to see so much detail in a car that there and gone within a second. Fascinating! Oh there are more pictures to talk about... wow!! How does he see all that so fast?!  So tonight you know you'll be reading his favorite train book with him after he plays with his trains and cars, of course.


Little music lover is still dancing and twirling around the room while making up songs about her favorite toys and what she's doing. Oh now she's singing about what I'm doing... who knew that making dinner could be so musical and fun? She did. Ok... so lets sing about Moooooommy is putting the skilleeeet on the stooooooove... Mommmy is getting some millllllllk...dance twirl...
you know she will be passed out probably before she even eats at the rate she is moving and wearing herself down.

All in all wasn't it a great day? I think I will pay more attention to that train the next time it slows down my day.. and take the time to really feel it and enjoy it... maybe even try to figure out just how all that stuff works together to make such a great song. Who knew trains were musical instruments, a beautiful work of art AND mechanical learning fun... my children did. Autism isn't so bad is it? No, I don't think so. I think it's pretty educational, eye opening and never boring.

New things stirring....

Again, it's been awhile since I've posted. Life seems to get away from me at times. I suppose, I allow that at times. Sometimes you just want to enjoy the high while it's there and not feel like I'm missing it by writing things that I can write later.... of course, I still forget some of those things that I think I won't. haha..

anyway, I've got a lot of thoughts stirring and a new post is coming soon.. it's going to be a deep one. I'm super excited to share it.

music

You ever find yourself surprised that you are sitting alone? I just had that happen to me. It's only 11 pm! Both of my children and my husband are asleep. I have no idea what to do..which is a rare thing for me so I decided to sit here and see what happens. I've got Twizzlers, Dr. Pepper and Pandora... here we go.

Funny how here I am at 30 years old and wanting to do the very same things I did 17 years ago haha. I want to listen to some rocking music and write. I still have no idea where to start writing... but nothing else about my life is the same.  I guess it helps to bring my mind back to a time when I thought things were hard but I got through it. Of course there are also those songs that I go to because they help me release some violent anger. ;) Truly amazing that no matter how different things are or how much time has passed music triggers so many emotions new and old.