A baby sister

So the day before Sam's birthday I was thinking to myself did we make a mistake in only having one child. My pregnancy was far from the worst in the world but just as far from the best as well. Dan and I made a decision that we would make a decision by the time Sam was two. Sam turning 2 came quicker than we both expected and Sam had already had 2 surgeries at this point, he was not really talking and I had gone back to the classroom. I am pretty sure the first time Sam was in recovery from his surgery and wasn't waking up so easily Dan and I decided we were done.

I remember when I was younger I thought I wanted 10 kids. I must have been on drugs.  I don't even know how I could fathom that. I did not get married until I was almost 30 and did not have Sam until I was 35. My perinatologist really made me feel terrible about my weight, and age when I became pregnant.  I am super sensitive pretty much about everything when I am not pregnant, when I was growing a human these things did not make me feel any better about my already rough pregnancy. At 20 weeks I was told there was something very  wrong with my unborn child's kidneys.  Scary shit. Loads of tests and guilt, so much guilt. ( P.S. not pregnant now and the guilt is still there)

I was worried that if we did have a 2nd he/she could have the same or worse kidney issues or god forbid something worse. I threw up from 6 weeks until 26 weeks, so much that I rotted my teeth out and had 8 cavities,  gestational diabetes, I had terrible post partum depression and was not sure how I could take care of the son I had already. I knew work would be impossible if I had a pregnancy like Sam's and financially I knew we couldn't take a hit.

Dan and I talk about if we had another child and did we make a mistake. I think Dan would have liked to have more kids. He says he saw how I was pregnant and had a hard time watching me like I was.  He is the oldest of 6.

We had genetic testing  done last  spring, here is more guilt. Sam has an extra arm on his 22 X chromosome ( guess who that comes from??) Dr. Udell told me not to read too much into it but it could unlock some of Sam's issues (kidney, poor immune system, allergies, low cholesterol, etc.). I cried a little bit the day I read the report.  Sam thank god did not look like any of the kids in the database but I did think what if we did have a 2nd child.

They say the average family with a child on the spectrum spends $60,000 a year on treatment, on therapy, etc.  I know that if we had had another child and possibly another ASD child we would have not made it financially.  I know money is not the most  important thing but when therapy is $400 an hour and insurance is $300 a month for your child, you start to think of the $ signs.

Later that day Sam wakes up and asks for a baby sister.  Ok I didn't know what it say.  It was as if he had read my mind. I made him ask daddy in the car. He giggled and said it. I was a little heartbroken because I think we made the right decision but maybe we didn't.

Why my day job is hard...

One of the reasons my real life job is so hard is because of emails like this.  I have changed names to make sure I do not get into trouble but nothing else has been changed.  I was cleaning my inbox at work and cam upon this gem...

Original email-

Message body

Ms. Teacher;

        S.W came home today (1 Oct) and said that you gave her a zero for
 the following homework assignments--Light Foldable and Light Scavenger Hunt, 
after she turned these assignments in to Olivia—the paper picker-upper.  
After peeling the onion back a bit, S stated that her entire group got a 
zero b/c you stated that you didn’t receive the assignments.

I find it hard to believe that four students from the same group who 
completed these assignments individually and turned them in to the same person, 
mysteriously disappeared in thin air--resulting in a zero for each student.  
Isn’t this odd to you b/c it is to me.  I can see if one student assignment was
missing then you might deduct, that said student did not turn in the assignment,
but all four? Something’s fishy.

I will be visiting the school on Monday, 5 Oct to request a full investigation 
into this situation through the guidance counselor and or the Principle, unless 
the issue is resolved before then.

Please feel free to respond to this email and bring us up to speed.  

Father, 

My  response is below in another color. It is so very to be treated as a 
professional.  This student now treats me like I am a pile of dog shit I
 had to ask a colleague what to say because I was fuming.

The issue has been resolved

Travel Tips

(Let me preface this entry by saying I am in no way endorsing anything I write about here for any particular child or any commercial entity, these are just based on our travels with our child.)

Ok so travelling with children is tough. Traveling with a child with allergies makes it a bit more difficult and a kid that is on the spectrum adds another layer.

Sam is HIGHLY allergic to eggs and peanuts, tree nuts came up on a blood test, sensitivities to gluten, dairy, strawberries, mangoes, etc.  The list is pretty long. The ones I am most concerned with are the eggs and peanuts.  I will discuss the allergies at a later date because I could devote a whole blog to the amount of people who say to me “ do these kids really have such bad allergies?” Yes, yes the do and if exposed he/she could die so I do not mess around with it.

Sam is a pretty good traveler.  We have never been on a plane with him though. A couple of reasons why we haven’t flown with him are we never had the money in the past to go on vacation and I am afraid to fly.  The last plane trip I took was this summer and I was taking Xanax for all my flying. Prior to this summer’s trip the last time I flew was 8 years ago.  Many moons ago I travelled extensively for work and I took meds to cope but being responsible for Sam and Dan needing to be responsible for us both kind of lends itself to car trips. I am also nervous because what if Sam has a meltdown on a plane, what do we do then?

We travel 4.5 hours to go to Dr. Udell 3-4 times a year.  It is by far our longest trip so far.  If I was to pick a hotel chain that has been the best for us, it would be the Marriott chain.  I figured out when we went in the spring to Dr. Udell that the Townplace Suites have tiny ovens and full kitchens. This is AMAZING for picky kids and kids with allergies. This Townplace in particular is across the street from a strip mall with some food options and a Publix. The Residence Inn had some suites that have ovens but they are more expensive and there are limited suites that have ovens.  I remember from my days of travelling some of the extended suites hotels have kitchen set ups.

Some of these packing tips are more relevant to people who travel in cars rather than planes. I do not have to worry about how much my suitcase weighs. I did find a great suitcase that we took to California this summer by Lucas, it was light, fit a ton and had great wheels. ( the one I posted it not mine, I couldn't find a Lucas website. I got mine on sale at Dillard's for about $100)

Some things that make travelling easier for me I am adding below. I have a tendency to make lists and lose them.  I have an app on my phone called Google Keep.  This app allows me to have a running list of all the things we may need for Sam and I can check it off right on my phone or laptop. 

Having a toiletry bag ( this style is mine and I have had it since 2002, it has taken a beating and we use it for all three of us) already packed with our essentials in the linen closet.  This is a bit of an investment in the beginning but a lifesaver.  On a blog or pin I read it said to invest in throw away tooth brushes so you can leave them in a hotel (amazon.com). I also save slivers of soap( for skin sensitive peeps), a brush, small make-up remover, q-tips, travel deodorant, travel size toothpaste, asking for samples of make-up and hair care products, at Sephora, meds at Walmart( 81 cents), kids ibuprofen, a kid thermometer, sunscreen, bandaids, all sizes of Ziploc bags (things always leak), etc.  I can go into more detail if someone would like.  This bag was taken out as recently as last night because with Hurricane Hermine we lost power, and were going to stay at nana’s. The best thing was I knew how to find it in the dark I did not have to search for things to bring, it was already packed.

Lay out clothes for your child so he/she think they are picking what they want to wear. This is great for them to have a choice but truth is you have already picked out the clothes. Pack more clothes than you think you will need.  Someone may get sick at Disney and puke all over the only sweatshirt you have for him. You may then need to go on a wild goose chase to search at the outlet malls for something for your 4 year old to wear in the rain (true story!) Better to have too much than not enough. For the puke reason too quarters for washers and dryers ( some places have free laundry rooms for guests), and a laundry bag for all of your dirty items so you don't need to sort through clean and dirty when you come home.  Good places to pick these up at target, bed bath and beyond, mone is from Old Navy from when I traveled.

Make sure to bring more than one pair of shoes, blisters happen, shoes break. Sam has gotten better with trying on shoes but it is not one of his favorite things to do so not predicting an issue will save you time and money.

Some other goodies are a portable DVD player because Sam does not like to watch movies on the iPad and we have the cables that plug into most tv’s so he can watch on the tv as well. Of course  we still need the iPad and kindle, a suitcase just for Sam to put his toys, a cooler, a backpack ( easier than a purse and holds all of the electronics), a car blanket ( a blanket that is in the trunk we keep just in case),food for special needs( most Publix have dry ice and strafoam coolers to keep frozen things frozen) snacks for daddy, mommy and Sammy, drinks, car cell phone chargers ( these will work for some portable electronics as well.) I may need to revise this but this is the bulk of it. A lot of stuff to schlep from here to there but if we forget something we always have Waze to find the closest Target or Wal-Mart.

Thieves

 I wanted to share about Thieves. In our house we call it magic.  I am not sure how it works but it does. This was the first summer EVER Sam wasn't sick in his ENTIRE life. I asked Dr. Udell about 6 months ago about essential oils, he told me they have been used for thousands of years and couldn't hurt.  He also said there was some research done by famous doctors about the benefits of  essential oils. A friend I have that also teaches suggested I buy a started kit and try out all of the oils. I finally broke down and bought the kit this summer after Sam had been sick for what seemed like the 1000th time.

The first night I od’d Dan and Sam by putting 10 drops in the diffuser of thieves and turning it on in Sam’s closed room. BIG MISTAKE. Sam came out and said he had a headache so he wound up sleeping with me and Dan could not sleep in Sam’s room so he slept on the sofa.  The next day I texted my friend and asked her what I needed to do.  She replied and told me 1-2 drops for the diffuser to start but to maybe try putting it in a carrier oil and put it on Sam’s feet.  Sam did not have a sniffle, sneeze or cough once this summer. It may have had something to do with keeping him out of the cess pool indoor playgrounds we have gone to in the past but it is amazing.  We use it every night and put socks on his feet so he doesn’t slip.

Fast forward to our July visit with Dr. Udell.  I told him about how Sam had not gotten sick and how well he was doing.  He asked if I thought the Young Living was worth the cost. I explained that we have spent thousands upon thousands on trying to help Sam and this was just a small investment. I was thrilled it had worked so well. We talked about the famous doctors that did research on the oils and said maybe it was just good for Sam. The investment was about $170 for the starter kit all in, and technically I could sell it if I wanted to, with the start of school in Florida we have the kids getting sick again. I made two roller bottles of thieves ( with canola oil as a carrier) to give to co-workers with sick kids.  I swear by our magic.. 

Sam has had his share of complications I will say.  One of the main reasons I started this new and different blog was because our son was diagnosed on January 21, 2013 as being on the spectrum, or asd or whatever vernacular you would like to use. Why do I remember this date? Not because it was the date our lives were turned upside down, I made the brilliant move to make a very important Dr. appointment on my husband’s 27 birthday. This Dr. who we are going to visit at the end of the week, said I needed to write a blog. He likes me because I listen to him and follow what he says to help Sam get better. I don’t go research things on the internet to see if they is a magic pill to help Sam, I just listen.  This is rare for me because I question EVERYTHING. Nothing goes into my brain at face value.

Dr. Brian Udell is located in Davie, Florida. It is about 4.5 hours from our house. Our first appointment we had taken Sam to Disney on MLK weekend and I wanted to stab myself before the end of the trip. Sam was totally overwhelmed by the crowds and cried a lot. If another Disney employee told Dan, Sam or myself there was no crying in Disney I would make it my goal to make them cry at Disney. It sucked. We were exhausted, people were rude and we had a 3.5 year old that barely talked and could only cry to share his frustration.

Within 5 minutes of meeting Dr. Udell, he referred to Sam’s Autism. I started to think you didn’t even talk to him, you don’t know him,  what kind of crazy man are you?  The visit lasted about an hour and a half and we got back into our car and made the drive home. I cried the entire ride home from Weston to Palm Harbor. I cried at work, I cried to my friends, I was so deeply saddened by the diagnosis I feared so much.  I fell into a woe is me depression. I could not get my shit together at all. Dan tried to help me. I went to work and cried, came home and cried. Dan planned a whole night for me with a massage, facial, chocolate strawberries delivered to work and sushi. It was lovely and made me understand I needed to get my shit together. So I did.

Why tell all this now?  We are a society like to talk and share about things that do not really matter. Let’s post about how great things are instead of having a dialog how having a kid on the spectrum changes all of your lives or a sick family member who needs your help all of the time, or how being a mom is really hard?  People have tremendous guilt about how they live their lives, maybe not all of us but some of us. I have guilt. I am a master of guilt and it is my issue. Some things that cause this are I was older when I had Sam, I did not love being pregnant, I could not breast feed, I had post partum depression, I separated his shots but maybe not enough, I had to leave when he was less than one and go back to work, I could not take him places because of his meltdowns, I have anxiety and the list goes on and on. I didn’t talk about any of these things because when I did I was shamed even more because people don’t talk enough about these things. I am hoping maybe someone who had felt like me at one point reads this and knows they aren’t alone.

I KNOW! Two posts in one day.

Ok so I haven’t published my first blog post ( I did just a while ago) but as a few things have gone on lately I needed to write it all down.  I asked myself why am I writing this blog.  I think as a mom and a teacher I feel like sometimes no one listens to me, so maybe I need an outlet where at least someone is listening.  It may be a random person from Eureka, Kansas but like I have said before, I need validation. I think all humans need validation, but different degrees and some people cannot, or perhaps will not admit that.

Things I have learned about myself and really been thinking a lot about lately are:

I am impatient, not a great quality to have. I do not want to spend time doing things with people I do not like, do not respond to texts or phone calls, people that “ghost” you, etc. If you do not have time for me, adios..I make time for tons of people and sometimes I get left out. I would rather take all that excess time and energy that I spend on people who could give a shit less about me or my family and do something for myself. I think I get really grumpy when I don’t get down time.  Down time is not my drive to and from work or when I sleep, it is time that I can devote to something for me.

People hide what is really going on in their lives. As I said in my previous post everything is sunshine and roses on FB and IG. Realty is probably nothing like the selfie we take from an angle and add a filter and we look thinner and younger.  I think it bothers me. I am not in denial about my life. Have there been times in my life where I was? Yes, shit happens and it isn’t anyone’s business what happens every minute but we portray this false reality.

I guess a lot of these feelings really started after I had Sam. I had a terrible pregnancy ( for me). I did not have a rosy glow, my face was probably red from being dehydrated or throwing up for 20 weeks solid. Nothing stayed down. I listened to all my friends and tried all sorts of remedies and none of it worked. I had terrible motion sickness, my Dr. was at USF and we lived about an hour away with traffic. I had my head in a toilet or a bag way too much.

 At about 22 weeks when we found out Sam was going to be a boy, they told us he had some pretty serious complications with his kidneys. At the time we didn’t know how serious but enough to shake me to the core. The day after we found out I had gestational diabetes. I went on insulin 2 weeks later and because of my dose I would have really low blood sugar and fall asleep, where I couldn’t wake up. I could not be left alone, I could not drive and I became resentful of all the people who tried to help me because I couldn’t do it on my own.

I was 34 and needed a babysitter. I knew I had to do whatever the Dr. told me because I was now in constant fear for my unborn child.  I was told if I kept my diabetes under control I could give birth at 37 weeks. From about 30 weeks on I had weekly stress tests at the hospital, 2 times a week. 37 weeks came and passed and we waited until I was 38.5 weeks pregnant and I was brought in on a Wednesday and induced. 24 hours later after what the Dr. said was “failure to progress”, I had a C –section, Sam was born. Not without excitement, Dan and I didn’t see Sam at the beginning or hear him cry because the umbilical cord was wrapped around his neck, albeit loosely, but just enough to get our hearts pumping.

The next day a Dr. from St. Joe’s came in and said they needed a scan of Sam’s kidneys, They would need to catheterize him and shoot radioactive dye into him. I was still not walking because my epidural hadn’t worn off so my mom went with him. The doctor came up with the report and told me Sam would need emergency surgery. We spoke to the pediatrician and decided we needed to meet with a urologist. Sam did need surgery but it wound up being 15 months later, but alas that is another story.

We went home on Sunday and I was having trouble nursing. I was pumping and giving him formula. About 8 days after Sam was born I had a really high fever and thought I was having a panic attack. It was a really bad UTI and allergic to a lot of antibiotics. I had to pump and dump for weeks on end. It came back 3 times before an antibiotic worked.  I allowed people to make me feel badly about not being able to nurse and I started  to cry, a lot, all the time at night, the smallest thing overwhelmed me.  I could provide for my child, I could not take care of the house. It became so bad Dan had to bring me to my moms and the next day to my OB.  I went on meds and started to feel better. My friends told me it was the baby blues, but it was so much worse.  Why did people discredit the way I was feeling? Why did I not know of anyone I was friends with having post-partum depression? It was like it didn’t exist, which didn’t help me feel any better about myself.

My friends all “seemed” like they had perfect pregnancies. No issues and they loved being pregnant.  They could all nurse and all their children were perfect.  They could balance work and home and basically do everything.

I wish I would have had someone to talk to about all of this. I make sure to talk about it now to people who ask or share a story. These are the things we should talk about because it is important. Moms need other moms who are struggling to help them cope with the everyday things that maybe make being a mom, um not so much fun.

Hello again, it's me.

This is not my first blog.  It is actually my 3^rd one.  The first one was dedicated to my crafting business I had prior to my son being born.  #2 was an anonymous after my son was born to deal with the real feeling mom’s had and my post-partum depression. This 3^rd and hopefully final attempt is in response to a couple of friends telling me to write a book and my son’s doctor telling me to write a blog.

Let me introduce myself to you. My name is Julie, I am a full time mom and a full time middle school teacher.  I have been married to my husband, Dan for 11 years and we have a 6.5 year old autistic son named Sam. There is a constant struggle present in my life to be good enough in many aspects. A good enough mom, teacher, daughter, friend, co-worker..blah blah blah. Something you need to know about me, I am very hard on myself.  This is not a ploy for attention or sympathy, I truly feel this way for many reasons that are ingrained in the fibers of my being. I am always questioning a decision I make or have made, I deal with HUGE amounts of guilt and I really do care what people think.  I have been on this planet for some time now and as much as I would like to change this I am unsure if I have the ability to do so.

So why now?  I took a break from Facebook because it made me feel worse about myself. Why you are asking? People’s lives aren’t that great. We all don’t have fabulous day’s every day. People post things that hurt other people’s feelings or make them doubt the life they are living. So how is my life post FB, while I still have days where I feel like crap , I have a lot more time and a lot less stress. Was this stress self imposed? Maybe.

I still get on social media. I hopped on the twitter train and then my students found it. I like Instagram. I love looking at pictures of interesting people, or places. I have been on for a couple of years now. I follow people that inspire me, share meaningful quotes, make me laugh or make me want to be a better me.

I want to share the things that go on in my life because maybe I can help another ASD mom/dad or maybe someone else. Maybe someone will laugh at my thought process, maybe it will be an escape. I will share about my struggles, my job, my son, husband, friends, family, and pretty much life in general. I won’t be a total open book but I will be honest and truthful. I think we have become a society of veiled truths. We share what looks good, neat, pretty and with literal filters.  I am not sure but maybe it will be a much needed release for me.