Understanding people

I have had 2 amazing experiences with people interacting amazingly with Dorian. I got Dorian a watch the other day and it came with 2 charms. The check out person got the watch out for us but didn't see the charms were also zip-tied in. We had to pick up a prescription at another store and Dorian asked the check out person if they had scissors to free them. They didn't but they made a great effort to make sure they got us scissors. I didn't ask them to go above and beyond for us. They did anyway. The person even made sure to talk to Dorian about paw patrol and looked at his watch after the charms were on. That seemingly little thing made my life so much easier. I was prepared for screams and instead I got amazing service from a stranger.

The second was today in the pick up line for Marsi's school. Dorian has never met anyone that wasn't a friend. That means he has zero qualms about going up to random strangers and grabbing them or pretending to bite them like he did today. He decided to do a 6 step routine over and over the 8 minutes we were in line before the doors opened. Walk to the fence, walk to the building, walk to the tree and bite a leaf, walk into stranger #1 pretending to bite his hand, walk into stranger #2 pretending to bite his shirt, then walk to me for a hug. The first round was pure torture as I tried to stop him and apologize. They all just laughed. My favorite response was "We all have kids. We get it.' And that was that. It helps that most of these people have seen Dorian's antics the last couple of weeks while in line. The stranger #2 said "Sometimes God makes us special and full of personality." Yes. Yes He does.

Yes, these are little things. Those people probably already forgot about their kindness. They don't understand how big it is for me to have understanding people around.

"Don't let them pout a label on him!"

Today I had one of my first non supportive comments out in public (or the wild as I call it). The change of Marsi going to school has been incredibly hard on Dorian. He misses his buddy most of the day. I have tried to get him into more things like swimming lessons, rock climbing, gym daycare, and extra library trips to make up for it. Nothing can replace his sister. So, when we are waiting outside the school before we can get her, he gets really loud and excited. He sings, yells, climbs, screeches, tries to hit at me, runs into the door, and creates general mayhem. Most parents have been amazing. One even let Dorian walk into her leg over and over once. I was mortified but the other parent was amazing. Today the person in front of me asked if he was autistic since he acted like an autistic family member they had. I told him that Dorian would be getting testing. The lady behind me, who up to that point had been chatting with me about how Dorian was just like her son and smiling at me, said, "Don't let them put a label on him!". My response was, "well, I have the diagnosis and it has been incredibly helpful for me to understand myself". It didn't shut her up. She talked about how the school has wanted to test and label her son since kindergarten and she refuses because kids should be kids and there is nothing wrong with a little more rambunctiousness from a boy.

I don't disagree with her. Dorian is amazing and he will always be amazing. He is our little engineer.

But, I also know that hindsight is 20/20 as I think of who I was pre vs. post diagnosis and understanding. I know the benefits of having someone to talk to to tell you strategies to help with sensory overload. I know how it is to figure out better ways of asking for things. I know the benefits of a speech therapist that helped Dorian find his voice. I know a behavioral therapist would be invaluable to me if we could find a way for Dorian to use words instead of screeches when he is particularly upset. I don't want the label. I want help. I want Dorian to have the toolbox I got at 25 by the time he is a teen so he doesn't have to go through some of the things I had to go through.

My poor high school boyfriend. Sometimes I just want to write the biggest apology to him because I was terrible. One "hindsight is 20/20" conversation I remember was when I asked him why one of his friends didn't like me. The answer....when I get something in my head, I won't give it up. I laugh at that now because that is a basic tenant of autism.

If Dorian could have strategies and tools to use to find amazing friends who accept him wholly, my heart would be full. I have 2 people from high school I still talk with periodically. It wasn't until my diagnosis and me accepting myself for everything I am that I finally got more than 1 or 2 lasting friendships.

So, yes, I will label my kid if it helps him. It doesn't make him less. It will never make him less. It won't change the neurodiversity that makes him him.

It will give him better access to tools I never had.

I love him wholly. There are parts that are challenges. But damn, I love that boy and will give him everything I can to make him the best person he can be. And he is already a pretty awesome person.

Visitors...

There are many ways I know God knows every detail of my life. As time goes on, I gain more stories and a better understanding of just how involved He is. Today was fast Sunday.  There were 2 baby blessings scheduled. There were lots of visitors. When I came in and found Endrit, the row in front of him were talking to the people in the row behind him. The people on both rows were visitors. Dorian was having a very symptomatic spectrum day with flappy hands, penguin step walking, constant movement, etc. He was wanting to flip over my legs into the aisle before the first announcement so I told him, "It is way too early in the meeting for you to be this antsy." To which the whole row in front of us turned around chuckling. I apologized and informed them of his spectrum tendencies. Come to find out 1 lady has been a special educator for 20 years and her daughter was in the process of getting licenced as a special educator this year. The best part was when the older lady told me , "This is a church for families. If they can't handle that, they can go elsewhere." I almost started crying then and there. It is truly the little things in life. The small kindnesses. The looks of Christlike love instead of judgement. My life has changed so much since becoming a mother. I have seen what Christlike love looks like in practice. With the challenges of Marsi's birth, heart issues, and Endrit being unemployed post-PhD, and now Dorian's tendancies, I am finding myself constantly coming closer to Heavenly Father. His love and care are so apparent in these simple instances. So, to the wonderful visitors in the chapel with me today, Thank you for being amazing Christians.

Someone asked me to...

I might start writing again.  Maybe.  I was asked to share about postpartum depression.  That period of my life was really hard and I like to help others with my experiences so I decided to write.
This is completely unedited and probably a total muddled mess, but welcome to my mind.

Autism, pregnancy loss, birth trauma, and postpartum depression.

I am a woman on the autism spectrum diagnosed with Asperger’s Syndrome before it was incorporated into the autism spectrum.  This has a large influence why my path into motherhood was truly a traumatic time. 

My husband and I had been married for 5 years before we decided to try for a child.  Growing up, I cannot recall a time where I didn’t want to become a mother.  I also wanted to be a geologist, chemist, teacher, etc. but MOM was always on the list.  I had my geology/teaching degree and was teaching middle school.  Life was amazing.  My parents were moving away from my “hometown” which made me cry with happiness.  Where I grew up was horrible for my whole family.  Then I had 4 miscarriages in a row.  My start to motherhood was entirely pain and heartbreak.  I was depressed.  My favorite school administrator died and I attended her funeral amid a miscarriage.  One of my 8^th grade students fell pregnant and another one fatally shot another student accidentally.  My body/brain/hormones were in turmoil.  While trying to save a pregnancy, I had to get off of all my mood stabilizing medications that help me with the sensitivities I have from not being neurotypical.  Then I was able to keep a pregnancy. It was amazing. I was happy to be so sick.  The doctor, not so much because I lost almost 30 pounds because of hyperemesis.  But, I was able to stay pregnant.  My students saw me run to the sink to puke.  They saw me endlessly trying to sip at ginger ale.  I wasn’t on my medications so stress caused pre-term labor and I was placed on bed rest right at the end of the school year.  We bought a Netflix subscription that summer. 

When the time came to give birth to my daughter, it was stress.  My parents were half a world away when we thought I would have her.  Then she didn’t come…and didn’t come.  Pre-term labor ended in an overdue baby.  My parents had to postpone their move (that they had already postponed for a month due to my baby girl coming). I felt like I was letting everyone down.  The day finally arrived when she would come. Transfer from a free-standing birth center to the hospital became a necessity. She was stuck.  She wouldn’t turn.  She wouldn’t descend.  I had been in active labor for 24 hours. The hospital gave me the epidural and let me rest for a couple of hours while they tried to turn her; to no avail.  After 3 hours of constant pushing she was finally born via forceps. 9 pounds, 19 inches, wrong position, but she was out. 

Because of the relatively traumatic entrance into this world, she was taken to the nursery for testing.  She was large and I didn’t have the healthiest of pregnancies.  They wanted to make sure that she was okay.  She spiked a fever and ended up being in the hospital for 6 days on antibiotics.  She had a spinal tap and at least 10 IVs.  I was thrust head first into this crazy part of motherhood I never expected to go through.  I had my mind prepared for something vastly different than what was placed before me.  Through pure adrenaline I got through those first days. 

When I got home, my mom stayed with us for a week.  When the adrenaline and oxytocin crashed, I crashed.  Waking up and caring for my baby was relatively easy.  I was having great success breastfeeding.  But around 1 pm the thought of bathing, feeding and getting her ready for bed pushed me into melt down mode.  I didn’t want to have to go to sleep.  What if something happened to her while she was sleeping and I lost her. Having lost 5 pregnancies, (1 before officially trying) this was a huge fear.  I cried. A lot.  My mom got my daughter into the stroller and we took long walks in the park thinking fresh air and exercise might help.  I had been cooped up in the hospital for a week.  We tried that for 2 days.  When it happened again my mom asked if I thought it was more than just stress and if it might be postpartum depression.  Having a knowledge that I am prone to anxiety and depression through my autistic tendencies, as well as being off my medication for a year, I knew I needed to see a doctor.

My faith in the medical system had failed me in many ways with the birth of my daughter. But, when I called them and said the words “for postpartum depression” They got me into a doctor within an hour.  I was literally trying to get clothes on to get out the door as I was on the phone.  They took it extremely seriously which was wonderful.  The nurse was amazing and the doctor listened to everything and talking with her about my experiences with past medication as well as my desire to breastfeed we settled on a medication proved to work with me that wasn’t bad for breastfeeding. 

It was NOT an instant fix.  It was NOT a total fix.  My parents were still moving. My poor mother had to leave after a week at my house (2 days after starting medication). She was fearful for me but grateful my husband would be there. That was another depression contribution.  My husband had graduated with his PhD in Chemistry 3 days before the birth and was unemployed and job hunting across the country.  I knew we would be moving “soon” as well.  I still had a major fear of taking my daughter to the doctor thinking they might find another thing wrong with her and we would again be stuck in the hospital.  I still cried at 1 pm every day for a month.  There were days that the only thing I washed was my nipple for her to eat safely. 

Depression and anxiety has been my constant companion for most of my life.  Change has never been easy.  I have had full on panic attacks because the orientation of chairs in a classroom got changed from the way they had always been.  How much more of a change is having a child that depends on you for everything?  I can’t even express the dichotomy of the pure joy of finally fulfilling my deepest desire to have a child paired with the complete and absolute fear of that child depending on you for everything when you are trying to figure out how to brush your own teeth and hair.  It fell onto my husband to make sure I was taken care of while I tried to care for our child. 

The postpartum depression hit a new facet when we decided that I needed to go back to work.  My husband had always wanted to be the breadwinner.  He wanted to get his PhD, get a post-doctoral position and provide for his family.  I always wanted to be a stay at home mother for at least a few years.  Our dreams were yet again shattered.  He got to experience being a stay at home dad.  I got to experience what it meant to be a working/breastfeeding mother.  As a substitute teacher, it is hard to figure out where to pump and then store your fresh milk.  I still remember crying during a high school prep period I had while pumping in a car shop.  I was teaching a shop class for a day.  Our situation made the depression come back in a vengeance. Sometimes the depression is hormonal, sometimes it is situational.  Sometimes it is a horrible mixture of everything.  As the hormones situated themselves and the medication was in full potency situational depression got better. 

The fact that I had a job that I had to get up, get ready, go, and do was good for me.  It at least meant my hair and teeth were brushed.  It wasn’t easy.  My husband almost got on medication himself because of the depression he fell into being unemployed.   It eventually got better.  I would say the depression lasted a good 6 months after she was born.

We were able to get through a heart defect/potential congestive heart failure/surgery/post op with our daughter.  My fears of losing her almost happened.  I got a call for a permanent teaching position offer as I was sitting next to my 4-month-old in the ICU.

Honestly, if I had not listened to my mother to go to the doctor 3 days after coming home, I don’t know how I would have handled everything.  My natural tendencies of anxiety and depression in addition to situational anxiety and hormonal crashes are a recipe for disaster.  No matter what, becoming a mother is one of the biggest changes you can go through in your life. 

I was lucky. I had my life partner by my side the entire time.  I didn’t have to be home alone after a week or less. I had a mother that encouraged me to go to the doctor for medications.  I had the knowledge of what medications worked for me.  I had knowledge of strategies to get through life changes with my position on the autism spectrum.  These put together ensured my successful trek through what was my experience of postpartum depression.

The mole revisited...

So, I have melanoma. That is all I know. I am not sharing this tidbit on my Facebook or instagram accounts until I have more information. I go into the doctor on Monday and hopefully gain a better insight into the stage it is at and what the treatment will entail and what further tests I need to do. Life can sure throw you curveballs!

I fell off the wagon...

And I fell off HARD.  I was doing so well...and then life happened.  Stressful, crazy life happened.  I started drinking mountain dew again. Diet to begin with.  Then it was regular. Then it was a liter of regular.  Yesterday, I didn't because I didn't go to the store.  But, I did practically only eat sugar.  I have been having way too much sugar these days.  Yesterday was the start of a couple of other things so last night, I decided enough was enough.  I NEED to get healthy.  I want to be there for my kids and my grandkids in many, many years.  I am spending way too much money on crap.  That needs to stop.  So, today is a new day.  I am back on the wagon.  I know it won't be easy.  I am a sugar addict.  I crave all the candy.  Endrit is even awesome and brings me candy and brownies and other things.  So, I will go back to going to the store one time a week and buying the fresh foods for the week.  I refuse to buy mountain dew no matter how bad of a headache I get while I am getting off of that addiction.  I have decided that I might pay myself a minimal amount of money each day I reach my goals.  Then when I get healthier, I can use that to buy some clothes or something.  Pray for me.  Kicking sugar and caffeine addictions are crazy hard...but I can do it.  I will do it.

smartphoneless

Just as I thought I was going to have my smartphone back, the proxy charger stopped working...whatever dude...it is so frustrating.

But, we decided that we would just get 2 batteries and a wall charger and call it good swapping out batteries.   We only have to make it to the end of May so it isn't that bad.  Technology and I have not been having a good relationship since about December.  Hopefully in May, it will get better.