Holly Springs

Growing up in a small town in the south, I saw things that most people only still exist in the movies.  I knew of segregation like it was still the 1930s in America.  By segregation I do not only mean segregation by race, I mean segregation by many different ways.  Race, class, and abilities were all separated in a small town like Holly Springs.  Of course, since it's the south, many people seem to focus on only race but now that I have a special needs child, I see that when I was growing up, segregation is much more than just about race. 

The day before Christmas Eve, a tornado hit Holly Springs.  It is reported that the F-4 tornado was on land for approximately 132 miles.  That's a lot of damage, to a lot of people, two days before Christmas.  See the thing about a natural disaster is that you are not spared based on race, class, or abilities.  When a tornado is on land for 132 miles, you'd better believe it's going to damage the wealthy, the poor, the white, the black, the healthy and the disabled. 

I have had a lot of friends on social media posting pictures and comments about the disaster.  Each and everyone are heartbreaking to see.  I have heard from my family that utility crews have worked around the clock to restore power over the past week and that the town has pulled together in this time of need to help each other despite the segregation that is common in the community.

There is one story that I cannot help but to have on my mind daily since the disaster.  When I was growing up in Holly Springs, I didn't know anyone that was special needs.  I didn't understand the difference in private and public school systems and I didn't know that I was completely blind to the reality of what families go through when they have a child who has needs that are outside the scope of what can be provided in a private institution. Through social media, I have learned that there is, in fact, a whole different side to my little town of Holly Springs.  One that, without the power of those social connections online, I would have never known.  There is a little boy in Holly Springs who is autistic and non-verbal like Aubrey.  Everyone calls him Boo.  His mother, Linda, has an in-home daycare.  I am certain that, just like myself, Linda's schedule must revolve around Boo.  Boo is several years older than Aubrey so I find myself looking to Linda's post about Boo to catch a glimpse of what could be in store for Aubrey's future as a non-verbal child.  I know that no two children are alike but I can't help but to follow Boo's journey.  Two weeks ago, Linda posted a video of Boo in speech therapy. She was absolutely ecstatic because Boo said "Ma" as in Moma for the first time.  I have repeatedly watched the video and cry every single time.  She was so proud of him and the smile on his face clearly shows him acknowledging his accomplishment. One week after witnessing an amazing accomplishment, I was devastated to see the post of the weather that was striking Holly Springs and Boo.  At the time, Linda had five additional children in her care in her home.  My heart sank thinking about the confusion and distress that Boo must have been experiencing.  I could imagine myself trying to calm Aubrey in such a horrific disaster.  I know how stressful a trip to the grocery store can be for an autistic child and now here this mother was with her special needs child and children that she is responsible for in that moment. The sheer adrenaline that Linda must have felt would be overwhelming to most.  The tornado did damage to their home, they had no power but luckily there were no injuries.  I have watched for post from Linda over the past week and even though her life has been turned completely upside down, she remains positive.  They stayed in a hotel briefly but have returned home now.  Being in a home with no power, or internet for that matter, with an autistic child is only something a strong woman could handle.  That might seem insignificant compared to everything else that happened to people in Holly Springs but for one second imagine you having a child, in the aftermath of a tornado.  You want to know his thoughts, feelings, understanding of the situation because it's extremely traumatic for anyone. He can't tell you those things though.  I would be concerned that Aubrey worried about her friends from school or that her grandma was safe.  I know she would never explain all of those thoughts or fears on her talker, yet she would still have those them.  I am grateful that Linda and Boo are okay but my heart is still broken for the damage and confusion that they have gone through and will continue to work out. 

I am encouraged to see that the little town of  Holly Springs has put all of the segregation, that I knew growing up, behind it and is moving on to a modern day mentality.  I see all of the support that Linda and Boo are receiving on Face Book and I see her post on everyone that is helping her out.  I also love how grateful Linda is for the community she is in.  She is surrounded by support and love and in return she is able to be a great and strong mom for Boo.

For more information on how you can help the town of Holly Springs, please see the links below. 

https://www.facebook.com/MarshallCountyHollySpringsDisasterReliefEffort/?fref=nf

https://www.gofundme.com/8ug6vjxm

https://operationbbqrelief.org/

https://www.gofundme.com/u3g6xfw4



 

         

Happy Holidays!

Merry Christmas and Happy New Year from the Nygaards!

This year has been full of ups, downs and everything in between for us.  It certainly has been a journey and we have embraced every moment of it.

We started the year off with a new puppy, Sophie. She was our first family pet and she just made herself right at home and never lets Aubrey out of her sight.  They spent many, many hours of early Spring on the play set in our back yard.  They just became the best of buddies. Aubrey continued with gymnastics and had her first exhibition in late March.  We quickly learned that she is quite the showman.  As the snow started to melt, Aubrey found herself back in her favorite place in the world, the giant mud puddle that forms in our driveway.  Wait for mom to turn her back, take off running, jump in the mud, eat the mud, dunk head under water into mud, get in trouble, shower, repeat - over and over and over again.  We also enjoyed visiting the dinosaur exhibit in Minot in April and Aubrey's first birthday party for a classmate.  By the time Summer rolled around, Aubrey had mastered her new communication device and was beginning to express her thoughts and feelings with ease. Her frustrations of being non-verbal started to ease and we were finally able to have a better understanding of her daily thoughts.

Seth ran the Fargo Half Marathon again in May where he ran in the top 10% for his age.  He continues to impress with his dedication to being physically fit.

Seeding started in May and we helped Ray with that and started gearing up for a busy Summer.

Aubrey finished Kindergarten and hosted the end of year school party at the indoor water park in Williston where got to hang out with all of her friends at the pool.  She was the happiest girl alive with her friends and in the water at the same time.  We later celebrated her birthday at the community pool in Crosby with a few close friends.  Also in June, Aubrey met Mac.  Mac is the horse that Aubrey has fallen in love with and gets to ride once a week, every week while the weather is cooperative.

I took the entire summer off from work to be home with Aubrey and to farm with Ray.  We spent most days of June and July playing outside, going for walks and playing spelling games. Aubrey attended Summer School for one hour each morning to ensure she stayed familiar with the school environment.  I started my blog during this time to help find a creative outlet for myself and have found it to serve much more purpose than just me expressing my thoughts.  I have thousands of readers in over ten countries.  I love knowing that my experiences with Aubrey are enjoyed and helpful to so many.

In late July, Aubrey and I took an epic road trip down to Mississippi to visit my family.  We made it in two days and it took me two days to convince her to get back into my vehicle.  A road trip, alone, with an autistic six year old was quite the experience, to say the least.  We sang the same Dora song about 999 times and she ate way too many peanut butter and jelly sandwiches. We visited family in Holly Springs for a few days and then Seth flew down and we made our way to Orange Beach, Alabama.  We stayed for a full week and were joined by my mom, Drew, my grandmother, and great aunt the first few days and then my dad and Marsha the last few days.  We had a blast! We did everything from parasailing to laser tag to visiting the infamous Florabama with a lot a swimming from daybreak to sunset.  It was an absolutely amazing family vacation.  On the way home, we stopped in Nashville to see Tyler and catch up with him over dinner.

As soon as we returned home, harvest started.  Aubrey and I spent the beginning driving grain trucks up to Crosby.  Eventually, Ray got all three combines online and I spent the next month combining wheat and durum and learning the ins and outs of all things required to farm full time. Aubrey spent a lot of time with Grandma Jeanie and Jeanie certainly had her work cut out trying to keep up with her.

Aubrey started First Grade in August and again is in a mainstream classroom with a full time aide. She transitioned fairly quickly back into her routine and just as quickly let us know that she had advanced well beyond some First Grade subjects and would need to be moved up to Second Grade spelling.  She has also taken an interest in science and has demanded that she be allowed to study the subject every day of the week and not just two days a week, as her class does.  

Our nephew, Bryce (Tyler's son), came to visit for a night at the end of August and we had a jammed packed two days of fun!  He has grown so much over the past year and is so full of life and joy.  He is now living just outside of Scranton, Pennsylvania with his mom who is a RN at the hospital there.

As harvest wrapped up in early September, I went back to work at the law office in Crosby.  I had to make a few adjustments when I returned as the job as a full time Oil and Gas Paralegal was not existent anymore with the sharp decline in the oil industry in Western North Dakota.  I have been able to keep busy with assisting in title corrective, land transactions, and family law though.

Seth continues to work for Hess at their gas plant in Tioga, ND.  Hess has proven to be a great company to work for and he still enjoys his work very much.

Drew is entering his junior year at Ole Miss in Oxford, Mississippi where he is majoring in accounting.  He ended the semester with four As and one B.  He has been working for JCG Apparel in Oxford for the past year and half and they are generous enough to completely work around his school schedule.    

We are now on Christmas break and will be spending Christmas with Seth's family.  We want to wish everyone a very Merry Christmas and hope you are filled with joy and peace this holiday season.  

 

It Takes a Villiage

We have all heard the African proverb, "It takes a Villiage to raise a child." I have never understood that old saying until lately. I have always had some help with Aubrey, but it has always come from family or paid help. Maybe it's because I didn't have the right Villiage or the Villiage didn't know what to think of a child like Aubrey, but I've never really reached out to the community for help with her. This past week, I started to realize that I'm in such an amazing community and maybe I can depend on them when I literally cannot do it all, at the same time. My office was involved in a one day trial and I would need to work a full day. Seems extremely normal for any woman in modern day society to work a full day and not have to go through numerous phone calls, Facebook messages, and text, but that's what it took for me to get in a full day. Seth was working, obviously he would be my first resort. Jeanie, my mother in law, was out of town. I've become extremely dependent on Jeanie for babysitting but she was out of town on this particular day. Next option would be Ray, Seth's dad. That might be alright for an hour or so but not really an option knowing Aubrey would need to eat and potty right after school. Hmmmm. What the heck was I going to do? I figured I could just leave the trial early. Awesome, I'll just get up in the middle of court and walk out to go get my child from school. Not ideal but I didn't really know what else I could do. I finally put in a Facebook message to one of the aides at the school to see if maybe Aubrey could go home with her for a while. That aide would be driving one of the bus routes that afternoon so that wouldn't work. What she could do though was call one of the other aides and see if she if she could help me out. Turns out she could. Now, text the gymnastics coach and see if Aubrey can stay a little bit late to help with the timing of it all. Score! I have someone to help with Aubrey for just a few hours. Now, I just had to coordinate with with Aubrey's primary aide at school and let her know I would dropping Aubrey earlier than normal and of the differences that would be occurring in the afternoon with someone else picking her up (i.e. Aubrey would need to dressed in gymnastics gear before she left school). Last step was just stopping by the school office to let them know what was going on. Ok so just to recap, I had to coordinate with Jeanie, 3 aides, a gymnastics coach and the school so that I could work for an extra 1.5 hrs. That's a a lot of coordination but luckily I have a Villiage to coordinate with. 

The second time the Village came into play this week was at the gymnastics exhibition yesterday. Aubrey is fortunate enough to be able to participate in these type events because the Gymnastics Board has been willing to hire a coach for her to do one-on-one lessons, at no extra cost. Aubrey practices twice a week and has an extremely charismatic coach who Aubrey just taken to very easily. So yesterday was the first time Aubrey has gotten to showcase her skills since last year. She showed absolutely no fear and went out onto that floor like a seasoned pro. Darn near the entire town was there and cheered her along. SHE LOVED IT! I couldn't help but be overwhelmed with emotion and gratitude for the support she was shown. Not every person in that gym knows all of her struggles or her life story but they could see how much she enjoyed her own success and how uninhabited she was in that moment. Once again, the Villiage was there to show its support. 

I could probably take this journey with Aubrey all by myself, if I had to, but I'm so honored to have a Villiage that is behind me all the way. 

The Beginning Of The Holiday Season

Tonight is Halloween, also known as the beginning of the "holiday" season to us.  Ok so this is how it goes.....first there is Halloween, then Thanksgiving, then Christmas.  Each one is something of a nightmare for Aubrey and each one brings unbelievable amounts of excuses from me to our friends and family.  Let's start with Halloween.  Guess what? It makes absolutely no sense to her.  Here is this day that everyone wants to wear all of these weird clothes, draw on something called a pumpkin and eat candy.  Oh and by the way, she never even eats candy.  The worst thing about Halloween is all of the "Can you say?"  Can you say trick-or-treat ?  Can you say thank you?  Who are you dressed up as?, etc.  Let's do all of that, in the cold, just to get a bunch of candy that she doesn't even want, no thank you. This year I dressed her up for approximately 20 minutes, told her what she was dressed up as and let her try some chocolate.  That way she knows what the heck all of the other kids are talking about at school on Monday but she didn't have to endure the actual interactions that come with Halloween. 

Next there is Thanksgiving.  This is probably the least hectic of the three but still has it's frustrations.  This is the day she pretty much just hides out from everybody and eats after everyone else.  All of the other children in our family are not in school with her.  The holidays are really the only time she is faced with other children, for long periods of time, who do not know or have a great understanding of her.  She is usually quite content to hide out with her iPad for the entire day in a back bedroom somewhere.  Either that or we end up leaving early so that she is not in seclusion for the entire day. 

Then there is Christmas.  Christmas is the mother of all holidays.  The gifts, the people, the travel, the church, the dressing up, the photos.  The gifting process is a lot like her birthday used to be.  At home we have given up on the unwrapping of gifts for the most part.  Santa is a very generous man and leaves everything unwrapped in front of the tree.  He also helps mommy and daddy and leaves there gifts for Aubrey out too. Doesn't really matter though because unless it's a new season of a show or a character toy from one of her favorite shows, it's thrown to the side within 5 minutes.  This year it will be a new guitar and believe me, we started talking about it last month hoping that she will at lease show a little interest in it on Christmas seeing as how there will be 4 months of discussion about it.  Then there is always a Christmas dinner or lunch somewhere where she again wants to hide out and do whatever it takes to get away from the noise and commotion.  If I can somehow get her through a church service, I feel like a master of mothering.  Starting last year, Aubrey started having extreme sensory issues with her lower legs.  Stockings under a dress must seem more like needles in her skin than warm coverings. There is not a chance in this world that I can get her in a dress with stockings anymore so now we have to consider how to avoid the cold in all events. 

So this holiday season if you hear me say, "She doesn't feel well", "She is tired", "She has had a long day", "We will wait on Seth to come", "I'm not sure that's the best idea for Aubrey", what I really mean is "My daughter doesn't like loud noises, she doesn't understand why there are so many people here, she doesn't understand what a gift is, she gets unbelievably annoyed at answering the same questions over and over with her talker, she would really like to have on shorts and a tshirt right now, don't ask her what Santa brought her because she either has no idea what you are talking about or never bothered to acknowledge anything under the tree."

So please be patient with us this holiday season.  It means so much for Seth and I to see everyone and to catch up with the families.  We want to be included but it's just a little more complicated for us sometimes.

Age Is Just a Number........Hopefully

Two days ago I turned 31.  At my age, the celebration is a little more low key and the day would almost go unnoticed if not for the flower shop making several visits to my office.  There is a sort of reflection that most people have on their birthday.  I usually think about what achievements I have made in 31 years, the places I have traveled, basically how my journey in life has brought me to my 31st year of life.  The past few years have also come with other thoughts too.  How long will I live?  I used to think about how I might want to age gracefully or what friends I could see myself gossiping with when I am in the nursing home. Now, I just calculate to what age I will need to live to in order to care for Aubrey for the rest of her life.  I have deep thought of what her life would be like if someone had to start completely over with her. How long would a book be if I sat down to describe every detail of what needs to be completed in a day's time, what words we use in every situation, what my vision is for her future and how I plan to achieve it.  It has taken me six years to get to the point we are at right now, how long would it take someone else to remaster her necessary care.  I know that this is the most terrifying thought for any special needs parent.  I literally feel the need to live an abnormally long life.  Of course, I have taken steps to ensure Aubrey would be seen after in the event of on unexpected accident but aside from that, I think I will have the will to see after her forever.  It's an odd thing for most people to understand. It seems like a morbid thought but I am such a planner, why wouldn't I make plans for myself when I'm 90 years old. It's just the way it works when you are a special needs mom.  When any woman learns that she is pregnant, she starts planning her child's future.  She thinks of what preschool she thinks is the best fit, what academic expectations will be set, what sports are preferred, the college wishlist, the profession that would make her the most proud, what the wedding day will be like, how many grandkids she could handle at once.  When you have a child like Aubrey, you still have those thoughts, they are just altered slightly. My preschool preferences were based on one on one availability, academic expectations are still set but require a team of 10 people to sort through them, I dream of a college that is accepting of young adult like her, I hope that she will be a brilliant doctor or scientist because I know that she sees things differently in her mind than we do, I'm not sure that there will a wedding day or grandkids so that thought stays on hold.  That's where it stops for a typical mother.  That only seems like the beginning to me though.  I feel like adults with special needs have fewer opportunities and fewer expectations than children with special needs.  I'm not saying that there aren't a lot of great programs out there for adults with needs but I think we have to change the way feel about these adults within society.  It almost seems that whatever abilities they have by age 21, that's the expectation for the rest of their lives.  How much sense does that make?  It took Aubrey 6 years to pick up a spoon and feed herself, obviously it may take her 30 years to make it through the public and higher education system and possibly 40 years to become an independent adult.  Why are we so willing to give them all of the extra tools as a child and then not follow through when they turn into an adult?  Society doesn't seem to mind throwing tax dollars into programs like "No Child Left Behind", which is amazing but why is it only children that society feels obligated to set up for success?  I know parents never give up but it seems like the system does.  That's why I might just have to live forever.  I'll want to see that she is afforded every opportunity possible in her life, that she has every available resource and that she is always loved with the deepest type love that is humanly possible.   

   

Moving Right Along

Aubrey just finished her first full week of First Grade. As usual, I cannot sing enough praises for her school. They have been completely in tune with her needs and accommodating to her adjustment at the beginning of a new year. Her teacher is new to the school and even she has just welcomed Aubrey with open arms. I know that it is hard to imagine anyone not welcoming Aubrey into their classroom but I can definitely tell you that we have it better than most. I follow several other parents blogs their children with autism and I KNOW we are extremely lucky to have the support system and open mindedness that we do. 

One person that I have not mentioned a lot in the past is Aubrey's paraprofessional. She really is Aubrey's lifeline at school. This person is with Aubrey throughout most of the day and has been since Aubrey was in preschool. She is my window to Aubrey's day and the liaison between Aubrey and everyone else at the school. She knows what makes Aubrey tick. She knows what foods she likes, what sensory activities work best, what subjects Aubrey excels in and what is a struggle. Aubrey depends on her constantly and she never gives up on Aubrey. At the end of every day, she gives me the rundown of how the day went and what emotions were expressed throughout the day - mad, sad, excited, etc. I would be so clueless without her. I really does take a special kind of person to work with special needs children. 

Aubrey is off to a great start and made a 100% on her first spelling test on Friday. I'm sure she could have aced most of the spelling test given in the elementary school though. I want to keep the momentum going and hopefully even continue being on time for school, not our strong point last year. 😊 

All of the Thoughts That Come With Having a Baby

Today I had an appointment with a Hemotologist in Fargo. After my last miscarriage, it was discovered that I have a genetic mutation that is likely causing a clotting issue during my pregnancies. As I've mentioned before, I had my fourth miscarriage a few months ago at seventeen weeks into the pregnancy. I also have a deletion on my X chromosome which would cause concern if I became pregnant with a boy. With all of that information, it is recommended that I get pregnant via In Vitro Fertilization and would be on medication throughout the pregnancy to combat the clotting. Even if I opted out of the IVF, I would still have to take medication to get pregnant. Luckily we have a great medical team down in Fargo to keep all of that straight. Sounds like everything is basically figured out and I should be looking forward to the first trimester of pregnancy, again, in no time at all. According to my medical chart, I'm sure that's exactly what it looks like. 

It's a rare occurrence that I can't make a decision about something. I can usually weigh the pros and cons and be on my way. I can't seem to come to a concrete conclusion when it comes to getting pregnant again though. There is no doubt that I want Aubrey to have siblings. I want a home full of children's laughter and creative messes and football in the back yard. I want those things for Aubrey and Seth too. There is never a time that I wonder if Aubrey would be better off as an only child. I do wonder if she would be jealous of a baby or sneak into its crib at night but I know it would bring out the very best of Aubrey. 

Here's the problem, there is something that doesn't sit well with me when I think of going with IVF. I'm not sure what it is, but it doesn't feel right in my heart. It makes complete sense in my head, but not in my heart. I don't know if I feel like I'm overriding nature or feel like it's just too much to handle if I lost another baby. Maybe neither, maybe both. So do I override my gut feeling and just do it anyway? As of today, I don't think so.  

I would love to hear from people who have these same experiences. 

Update 11-26-15:

We met with a geneticist this week and were told having a male child with the deletion on the X chromosome was too risky and that she would definitely recommend the IVF with the additional testing on the embryos. Being told a definitive opinion by a knowledgeable geneticist almost instantly settled my nerves and uneasiness about IVF. I think it was not sitting well with me because I had a lack of knowledge of the possible outcomes. Now that I have that, I was able to say with absolute certainly that it is something I want to do. I met with the fertility specialist yesterday and told her I was ready to start the process. I am once again excited about the idea of Aubrey having someone to grow up with and Seth to have someone to teach the game of soccer to. 

Happy Thanksgiving! 

Harvest

Harvest is in full swing around here with the temperature rising over 100 most days this week. Aubrey has been so flexible this week and just going with the flow, thankfully. It has been entirely too hot to have her with me all day so luckily Grandma Jeanie has been around to keep Aubrey when it heats up. So what is farming like when you're trying to do it with your special needs child? Here's how Wednesday went.... Make sure she eats a little more for breakfast because it could be pushing noon before I can get her lunch, pack her bag of water, bibs, change of clothes, wipes and food, put a towel down in the seat of the grain truck because it's just dirty, put her booster seat in the middle right next to me, gas the truck up even though it still has half a tank because breaking down when it's nearly 100 is just not an option, load her up and head to town, text the PT to let her know I'll be a little late because the loaded down truck is taking its sweet time climbing those hills on the way up, finally make it to town and rush Aubrey into swim, go to the elevator while she's working with PT to unload the truck, fret about the man in front of me who seems to be taking forever unloading his truck, get in the elevator and get unloaded, grab my ticket and rush back to pick Aubrey up, get her out of the pool and dressed again, discuss the upcoming IEP meeting with the PT, walk down to the hospital cafeteria so that I can have a place to sit and feed her lunch, get back in the grain truck and head home. By that time she needs a short little nap. Just lay in my lab and go to sleep until we get home. Call Jeanie and see if Aubrey can come over for a bit. Grab a sandwich and head out to the combine. Watch the sunset driving in circles out in the field. Give Aubrey a big hug and tell her that I love her and that I appreciate her being so good for me. 

So why do it at all? Obviously I didn't grow up on a farm so I'm just learning how it all works. I want to know absolutely without a doubt that this is something I can do before we jump into it all the way. Also, as my father in law grows older, I want to help him in any way possible. I want him to trust me with the machinery and equipment he has worked so hard to have. In order to do that, I have to learn about it. I have to know what it's like to haul peas all the way up to Crosby because you don't have enough storage for them, I have to know how it feels to be in a combine from dusk until dawn, I have to know how to have the patience to work on machinery, and the realization that sometimes mistakes happen, but most of all I have to know and understand what it's like to balance a family and a farm because finding that balance is really what makes everything else fall into place. 

Brothers

On August 10, my youngest brother turned 20. How did that happen so fast? I talk a lot about Aubrey and my struggles with her but the truth is, I've had practice in dealing with tough situations long before Aubrey was born. I grew up in a very unstable home, to say the least. I lived with with my mother, step father and two younger brothers. I had a different father than they did. My step father was a raging alcoholic who went into manic fits almost on a daily basis. He was always yelling and creating some sort of emotional disturbance with everyone in the home. It was absolute chaos. My first brother, Tyler, was born when I was almost 5. He was the most handsome child I have ever seen. He was the family's pride and joy and could be seen out and about with his grandfather most days, sometimes taking a stroll around the town square our out in the field in the old pick up. When I was almost 11, Drew was born. Things were just getting really rough in the family when he came along and I have a heavy heart for baby being in the environment he was in. He was a little bright eyes red headed happy go lucky child though. Not a care in the world. When I was 15, enough was enough and I could stand the emotional and verbal abuse from step father no more. I moved in with my father and step mother. I would lie awake in bed at night and cry and cry and cry thinking about my brothers being in the house. I thought of how unfair it was that they still had to endure the late night arguements and screaming well after midnight. I felt guilty for leaving them but I knew I couldn't actually do anything, yet. Three weeks after I graduated high school I joined the Air Force. I wanted a better life for myself and I wanted to make something of myself. When I was 21, Tyler was on the verge of destruction. My step father had made him the next victim of the constant pushing and never ending abuse. I was only 21 and I didn't feel ready to step in, but I did. I took custody of Tyler and moved him to ND with me. I had no idea what I was doing or how to handle a teenage boy. I wanted to do everything so perfectly but ended up doing everything so terribly wrong. One thing was certain though, Tyler was safe and that's what really mattered. He could rest at night without being woken up abruptly to a screaming match in the next room. Tyler left ND and moved back to Mississippi after he finished high school. Things seemed to be going pretty smoothly. My mother eventually left my step father and Drew stayed with him. He had become very sick and I think Drew felt bad for him. While I was pregnant with Aubrey, I began to realize things were not actually going so well for Drew. Since I was pregnant, I was in the county and not oversees or on some whirlwind training mission across the Pacific. I got to talk to Drew more he he began to open up about what was really going on. He had been working all summer and his dad was taking his money and wanted to control every move Drew made. I knew what would be coming soon enough.... and I knew I couldn't let Drew go through the same things Tyler and I had. When Seth and I moved to Mississippi, Drew started staying with us a lot. It was tough because Aubrey was in and out of the hospital. When I got the job offer in Las Vegas, there was no way I was leaving Drew there with his father, no way. I hired an attorney and got custody. A few years later, my step father died. He had essentially drank himself to death. The boys made their peace before he passed away and for that I was thankful. I told them both not to feel an ounce of guilt because death does not change what a person did while they were alive. 

Today, both boys are happy and healthy. Tyler is living in Nashville with his girlfriend and has a great job. Drew is going into his third year of college and majoring in economics and working almost full time. I think both boys are a true testament that you can rise above your upbringings. They both had a rough ride but have beat the odds and are thriving in life. Not a day goes by that I don't wish them both all the happiness in the world. 

Two Weeks and 16 States Later

Last night we returned from our summer vacation. It was the longest we have ever been away from home with Aubrey. On the trip down, it was just Aubrey and I. We went to Mississippi to see my family for a week and then Seth flew down and we all went to Orange Beach, Alabama for a week. The trip was full of new experiences for Aubrey. She got to experience a sweltering Mississippi summer, life without wifi, how to decifer southern accents, the joy of sweet tea, and that a place does exist where you can swim almost all day.

While I loved seeing how much fun she was having, I enjoyed watching her take in the world even more. With so many new things at her fingertips, it was interesting to see her reactions. Being in a car and traveling didn't seem to rock the boat too much. She and I have traveled together quite a bit and she seemed content with that for the most part. Being in a home setting with no internet, now that was a different story. It was like her little world was upside down and she was constantly searching for a connection to her comfort zone. It didn't bother her in the car but she was out of sorts in the house. Not being able to "stim" on the iPad was a big upset. Once she figured out that my phone was still capable of reaching Dora, UmiZoomi, and Super Why, the battle was on! For the most part, I lost and will end up with a gigantic data bill. Probably should have prepared a little better for that.  It is also always interesting to watch her with new people.  Usually she comes into contact with new people, who are trying to interact with her, in an educational setting so it's much different in a social setting.  She definitely tries to take advantage of the situation.  Case in point, when my grandfather is playing outside with Aubrey and he says, "is that iPad waterproof?"  Aubrey would never put her iPad in a swimming pool with me around.  She knew good ol' grandpa might let her try it out though.  So, she got to see what Dora looks like in a swimming pool....for about 10 seconds. It is really refreshing to see her do things that any typical 6 year old would do, like try to be sneaky when mom isn't around.

After the week visiting family, we headed to the the beach with my little brother, who loves Aubrey will all of his heart, my mom, my grandma and my great aunt. It was literally heaven on earth for her. First of all, she was back in business with wifi but even better was the pool.  There was a swimming pool that had a small water fall and the water was mostly only three feet deep.  She had the freedom to swim around and stay under water as much as she wanted to.  She was taking it all in.  She got to see so many other children playing and swimming and having a great time with their parents.  We only made it to the beach a few times.  That was more like sensory overload, not sensory nirvana.  The sand was hot, the water was too vast for spatial orientation, the water tasted funny and well frankly there were just too many jellyfish lurking for my comfort.  The pool was a much better fit.  One night we went out to play laser tag and hired a babysitter. Needless to say, Aubrey gave that poor girl a run for her money. iPad in the bath, refused to go to bed, wouldn't eat. I knew I would push her limits with a babysitter but I really wanted to take my grandmother to play laser tag. Apologies to the babysitter who was basically punished for me messing with Aubrey's routine. 

Halfway through the week, some of my family left and the other group had not yet arrived, so just Seth, Aubrey and I went down to a local shopping center where there was a Ferris Wheel.  We thought she might get a little frightened on it at first.  No way.  She loved every second of it.  She was taking it all in.  The wind in her face, the unsteadiness of the seat, the sights below her. She absolutely loved it.  After we got off she said "wheel" and demanded to go again. With an articulated demand like that, heck yes we can do it again. 

All in all it was a fantastic trip to the coast. She effectively communicated with everyone and swam her heart out. 

On the way home we took a different route home and went through Tennessee, Kentucky, Indiana, Illinois, Wisconsin, and Minnesota. We came home exhausted and ready to get back to our slower days. 

Big thanks to all of my family for being brave enough to vacation with us! 

Roles Within the Family

When Seth and I were first married with a new baby, our roles within the family were basically the same. We were both pretty clueless about what to do with a baby, both sleep deprived and both constantly worried about money and working as much as possible. 

Over the years though, our roles have evolved and we have each taken different responsibilities. In the beginning of Aubrey's journey, I would often think wonder if our marriage would survive. I had seen all of the terrible statistics on marriage failure when the couple had a child with special needs. I won't lie, it hasn't always been easy. We have definitely had our share of growing pains. Over the past year I have thought a lot about what role each of us play in our family. I know a lot of people who think everything should be equal in a marriage. You both work. You both help with the kids. You take turns going out. For us, this is just not the way it is. When we moved to ND I knew my role and contributions would forever be different. I was comfortable with the transition from splitting all task as evenly as possible, to each having different roles that we basically take full responsibility for. I would take the primary role of overseeing Aubrey's day to day activities and caring for our home and Seth would be responsible for our financial security. This might seem like I fell back into the 1950s to some but, I think it's different because back then those roles were never chosen. We decided, together, that this would be best for our family. The one thing that we do still split evenly is yard work. It did take time to settle into our new roles and we did have to discuss things often. Once we both had a clear understanding of what the other expected though, it has been smooth sailing. I don't complain about doing laundry constantly and Seth doesn't think it's unfair when I'm off two weeks at Christmas because Aubrey is out of school. It has been so helpful for both of us to understand how we can best contribute to our family and to ensure Aubrey's happiness. It takes so much stress out of a marriage when you both can decide what role you want to have, how you can compliment each other's role and how you can take all of the guess work out of what to expect form each other. We are two people who have committed our lives to raising a happy child, who we want to see be successful at life, whatever role that may be require us to take. 

True Friends

Coming home to Mississippi is sometimes one of the hardest things I do every year. It throws Aubrey out of her comfort zone, I have to explain her differences over and over and over again and then just about the time we are getting comfortable, it's time to leave. 

One thing that I very much look forward to while I'm here though is seeing my old friends. I went to a small school my entire life and had the same friends my whole life. Of course, over the years, the number of friends who still make time to see me when I'm home has dwindled, but that just makes our time together even more special. I feel like I can actually relax in the presence of my real friends. It's no secret that I have had a difficult time figuring out where I fit in our new community in North Dakota. I'm typically referred to as "Seth's wife" "Ray and Jean's daughter-in-law" or "Aubrey's mom". I have yet to find my real identity in a social setting there. I'm sure that one day I will just naturally fall into a circle of friends that I feel comfortable with, but that's not the case just yet. 

I would encourage people to make more time for their friends because those relationships can be the difference maker in someone's life. Parents who have children who are special needs need to find some sort of normalcy in their own life. My life is hectic and sometimes stressful and I very much enjoy the time that I can sit down and discuss things that don't really matter at all. It's those conversations that make me feel like regular person and someone who has her own identity under the special needs mom cape that I wear everyday. 

Do you think she is spoiled?

Today someone called Aubrey spoiled.  Now, I do not think this was meant to be hurtful but it did make me think about how other people view Aubrey's behavior.  Do I think she is spoiled? Yes, of course she is to some degree.  Aubrey is an only child who has her mother with her almost every minute of the day. Seth and I have done well financially and Aubrey has been given many extra things in life.  I think any child in that situation, special needs or not, would come to except certain things in life.  Aubrey expects to be able to have her iPad when she is not doing anything else.  She knows that she does not get to have it if she is at school, taking a walk, doing speech exercises at home, riding a horse, swimming, or doing any other mentally stimuating activity.  I have seen so much negative information about how it affects her brain or social interation. Being non verbal at six years old must be very frustrating for her.  She does not know how to have a full conversation with her communication device nor she does not have the patience to type out an entire conversation.  Her iPad is a way for her to avoid extensive interation with new people.  It diverts the attention away from her inability to speak like the rest of us are doing. She is able to constantly keep her mind stimulated with it and she knows and loves the characters in the shows that she watches.  I know that if I could not speak to anyone, I would not want to sit in a room full of people talking and listen to them talk, especially if I was a child and didn't understand what the adults were usually talking about. Take time to consider what your life would be like if you could not speak. If you want to judge the decisions I make as a parent, that is understandable. However, take time put yourself into Aubrey's situation before you judge her actions.

4 hour flight or 24 hour drive

A few days ago Aubrey and I started the long road trip to come back to my hometown of Holly Springs, Ms. It took us a full two days of driving with an overnight stay in Omaha, NE. It may seem like an insane take a road trip that will take over 24 hours with Aubrey but to me it's the easiest way to travel. Being alone in an airport with Aubrey has been one of the worst experiences I have ever had. It is always complete chaos. I need to have so many things to travel with her, diapers, wipes, bibs, iPads, and a change of clothes. It's almost the same as when she was an infant except now she weighs 55 lbs and still wants me to carry her. No thank you, I'll drive. When we drive, I can stop when I think she needs a break, we can sing silly songs really loudly, I don't have to worry about her hitting or biting anyone if they talk to her, I can pack a ton of food for her to eat whenever she likes and she does not have to be told to turn off all electronic devices, even the one that is her primary source or communication. She can just sit back and relax for two days. And that is exactly what she did. We did not run into any hiccups until we got into Arkansas and the cleanliness of the restrooms we were stopping at became an issue. Aubrey needs to touch things that are new to her and sometimes her preferred method of touch is with her mouth. She just prefers the oral sensory to touching with her hands. I am constantly saying, "No mouth please" or "Please do not lick that." It's usually not a huge issue because it will be something like the rough feel of concrete or mud or sand that she wants to feel. The bathrooms in Arkansas were something that actually made me put my hand over her mouth. She wanted to lay on the floors because the paint was peeling up and she needed to know how that felt. I had to basically bathe her with baby wipes when we got back in the car. We were definitely out of our bubble and it was uncomfortable. I will change our route home to stay closer to large cities and stay out of places that do not value customer satisfaction. We did make it home without incident and are visiting with family for the next few weeks.

IEPs

The question that I have been asked the most since writing this blog is "What is an IEP?"  An IEP is an Individual Education Plan. I'll explain what it means to our family. An IEP meeting is a meeting we have once a year, before the school year starts, with Aubrey's entire team to come up with goals and strageties for the year. For example, the occupational therapist may have a goal of Aubrey picking up a spoon and feeding herself by the end of the year. The strategy would be to have Aubrey use a spoon every day at lunch and require her to ask for assistance, using her iPad, if she needs it. Aubrey's team includes, myself, Seth, her classroom teacher, her paraprofessional, speech therapist, physical therapist, behavioral specialist, special education coordinator, physical education teacher, music teacher and the school principal. We all assemble to discuss the goals and strategies for the year. Each therapist usually has 3-6 goals they want to see achieved. We discuss things like how many minutes of speech therapy should she should have a week, how often should she be given breaks during the day, if she should go to lunch with the entire class, how to handle potty training at school, is music class having a positive or negative effect on her day, etc. 

In talking with other moms and from what I see on Pinterest and Instragram, IEP meeting can be an extremely stressful experience. Although they are indeed very long meetings, sometimes almost three hours, I don't mind them at all. It's the time that I get to ask all of the questions I have come up with since the end of the year and where I get to hear all of the great ideas everyone has for the year. I usually have many topics to discuss and am lucky enough that everyone listens and gives me feedback. Since Aubrey's IEP requires some modifications during the year, we have several of these meetings throughout the year where the entire team does not have to be present. I can honestly say that I have never walked out of one of those meetings and felt defeted or angry. There is usually only one area where I feel like there is a communication breakdown- this is a whole post that will come later - but other than that, I feel that Aubrey's entire team is on the same page and working toward the same goals.

For other parents who might be struggling or anxious about IEP meetings, I would say that there is nothing to stress about. You are your child's best advocate because you care about his/her success more than anyone else. So check those emotions at the door and get in there and be the strong advocate your child needs. Remember, this isn't about you, it's about the little boy or girls that depends on you. 

Summer School

Thursday will be the last day of summer school for Aubrey this year. This is the time that I really have to kick myself into overdrive. My fear is that she will lose some of the knowledge she has gained throughout the year. That she will get out of that routine that is so vital to her success. Last summer I prepared a learning room in our basement so that I have a place to take her during the day to work on various educational task. It's where we practice writing, coloring, painting, dressing magnetic dolls, etc. If I had it my way, the school would provide a program for her all summer but that is just not realistic. We will go on a vacation and then come home to a new schedule. Instead of rushing to school, because we are ALWAYS late, we will wake up, eat breakfast, get dressed and go downstairs. I like to have a goal in mind each morning for at least one thing I would like to see her accomplish for the day. Usually, it is more of a behavioral goal and not an academic one. Lengthening her attention span is usually something I want to work on. This summer, very basic concepts of math will be my main focus. Reading and spelling came so easily to her but math has been a struggle. I want to see her go into first grade with at least the very basic understanding of how you can add and subtract numbers. 

Wish us luck on our learning adventure! 

Emotional Breakthrough

One of the things that is the most difficult to understand about autism is how emotions are processed.  As an outsider it could sometimes seems as if there is a lack of emotion in Aubrey.  I like to think she just processes emotions differently or has emotions about different things.  She does not get overly excited to see a friend from school but she smiles from ear to ear if she thinks she can ride on a tractor.  She does not cry if she falls down but acts as if she is physically pained if I take her iPad away.  Real sadness is not something that I see from her often.  There have been two occasions that I really had to sit her down and talk to her about being sad.  The first time was when Seth moved to North Dakota two months before she and I did.  She missed him so much and it was so difficult to watch her looking for him.  Back then, she did not have a communication device so there was no conversation between the two of us.  I just simply had to reassure her that she would see him again and that he loved her very much.  I would only know for sure that she was thinking about him because she would come into our room, lay on his pillow and cry.  It was absolutely heart wrenching but, of course, they were soon reunited again. 

The second time that I really saw raw emotion come from her was when I miscarried a few months ago.  There had been so much excitement about the new baby.  Aubrey had learned that the baby was in my belly and would touch it when asked about the baby.  She had told her entire class that she was going to have a S-I-S-T-E-R.  We had discussed where the baby would sleep and how other things might be a little different around the house. There was no doubt that she was understanding what was going on and she was happy about it! Then, almost halfway through the pregnancy, the news came that there would not be a baby.  Mommy had to spend the night away from home and Grandma Jeanie was the first person to explain to her what was going on.  She was so sad.  She cried and wanted Grandma to comfort her.  For most children, this would be a normal reaction.  For Aubrey this was a breakthrough.  The only thing she had ever been visibly sad about was not seeing her father, the most adored man in her life, for two months.  This time she was sad about something that she had never seen.  She had no way of knowing what life would actually be like with a baby, but she was sad that now there would be no baby.  The night I got home from the hospital I tried to talk to her about it.  She just rolled her eyes at me, as if she already knew this news and did not need to hear it again.  Later that night, as I put her to bed, she started crying.  When I asked her why she was crying she said "B-A-B-Y."  The following days she adjusted and has not mentioned it to me again.  From time to time I see her watching the Dora episode where Dora's brother and sister are born or the Daniel Tiger where his mom has a baby.  I wonder if she is thinking about what happened or if she has questions that she wants to ask.  I might never know what she is really thinking but I do know that one day I will have that B-A-B-Y that we were all looking so forward to.        

B-E-D-T-I-M-E

Studies have shown that at least 83% of children who have autism have a sleeping disorder. Aubrey is definitely part of that 83%.  At one time this was a two part problem but it has been narrowed down to just one.  Until the past year I struggled with both getting Aubrey to go to fall asleep as well as her staying asleep.  Currently, she falls asleep with ease but staying asleep is still a nightly challenge.  Usually the second text I get from Seth in the morning is, "Did Aubrey wake up last night?".  3 am is her favorite middle of the night play time.  It is like she just cannot turn her brain off.  Even if she is exhausted enough to rest it for a few hours, if she somehow manages to wake her body up, the racing mind wins.  It seems to be a constant battle of body and brain.  I feel like I am always trying to physically exhaust her so that she can sleep all night.  A full day of school with after school activities did the trick most of the time this past year.  During the summer, she has to have at least four hours of outside play time for me to not listen for her all night.  Rainy days are the enemy! I have tried every trick in the book - melatonin, no sugar, lavender, sleeping in my bed, me sleeping in her bed, rocking her, leaving her in her room by herself, reading quietly, singing, etc. It seems as if there are just too many thoughts in her head and she cannot block them out.  Once she is up, it is very unusual for her to be able to fall back asleep until at least 10 am.  There are days that she just goes to school and sleeps for a few hours and of course that just throws everything off.  I am always open to suggestions of how to help her conquer a good night of rest.

Keeping a constant schedule is how I mastered the art of getting her to fall asleep.  Schedules are the key to so many successes in children with autism and the same has been true with Aubrey falling asleep at night.  Once she started kindergarten, her nightly homework was for us to read a book together and then I had to log it in her daily planner.  This was not only a great time to get some reading in, it was also a great activity to construct her nightly schedule around.  Reading a book is the last thing we do as she falls asleep. She has supper, a bath, gets dressed, climbs up in her bed and listens to me read. She knows what to expect every single night and there is no confusion about what she should do next. If I am running a little late with starting her nightly routine she will remind me that her day is coming to an end by spelling B-E-D-T-I-M-E over and over again on her iPad. Now, if I could get her to say that again as she's prying my eyelids open in the middle of the night.


http://treatautism.ca/2014/06/16/sleep-disorders-affect-83-of-children-diagnosed-with-autism/      

A Birthday Without Cake

Recently we celebrated Aubrey's 6th birthday. Her birthday has always been a little tricky for me to navigate. It really is a hard thing to explain to her. Today is the day you were born 6 years ago. A year is 365 days. Being born means that you came from mommy's belly. Because that happened, we are going to have a party. Having a party means that we will invite your friends to play. It doesn't mean that every time your friends come, it's a party though. We will have cake and ice cream but it's not always your birthday when we have cake and ice cream. Everyone will buy you a gift. Gifts are things that one person gives to another person. You open gifts in front of everyone so they can see what you got. I can explain all of those things but there is no way for me to know if she actually understands or not. I get a blank stare and if I'm lucky, she will spell one of the words I have just uttered and she moves on with whatever she was previously doing. This is pretty much how it goes when I explain anything that isn't part of our daily activities.

This year I decided to throw the traditional idea of a kid's birthday out the window and to do it the way that made the most sense for Aubrey. Now, I think it's important for the other children in her class to have some sense of normalcy when it comes to what they expect with a birthday party. These are the same kids that she will basically be spending the next 13 years with so I want them be as accepting as possible and sometimes that takes a little extra work on my part. I came up with a two part plan.  First, we would host the End of Year celebration for the entire grade. That way all of the kids could have cake and ice cream and treats and all of the "extra" stuff that comes along with a birthday party. Aubrey wouldn't have to be the center of attention but they still associated the party with her because she sent out the invitations. Then, I would invite everyone to swim for her actual birthday which was only a month later. No cake, no opening gifts, no singing a song while Aubrey wonders what the heck is going on. Just all of her little buddies swimming around her. Of course I choose swimming because it's her favorite activity and she shines at it. It worked out wonderfully! It was the least stressful birthday party she has ever had! We will never go back to the crying while opening gifts and her trying to hide in a corner with her iPad because everyone is loud and overwhelming. It's her day so we will do it her way. 

A Girl and a Horse Named Mac

Update 7-17-18

I wanted to look back at this old post below and see how Aubrey has progressed in her riding, because she has been at it for just a little over 3 years now.  A few things have changed, we added an occupational therapist to the mix, but it is mostly the same.  Reading the old post honestly made me tear up a little.  I wrote that she had written "run" on her talker during the session.  Today she used the word "race" instead, but the intent was all the same.  Three years later and she still just wants the horse to go fast!  She is still riding Mac once a week during the summer.  This year and last year, she stopped once school started and moved back to the pool for physical therapy.  It just gets cold out and I don't think any of us want to ask too much of the adorable woman that lends her time and horse to Aubrey.  Aubrey understands Mac much better these days and does some trotting and leads him and helps take off his saddle once the session is complete.  This activity is still one that Aubrey seems to really enjoy and I hope I can look back in another three years and say that she is still loving it just as much.

7-9-2015

Today was horse riding day! This is quickly becoming Aubrey's second favorite therapy. I'm not exactly sure if we can call it Hippotherapy since we do not do it with a licensed Hippotherapist. Since we live in such a small town, that type specialist is just not available.  We just have a lady who lets us use her horse and indoor arena, a physical therapist, a physical therapy assistant and a little girl who giggles for 45 minutes straight. This is a new activity for Aubrey and today was only her 4th time riding. The plan was to start very slowly with getting Aubrey familiar with a horse and then work up to actually riding. That was out the window within the first 5 minutes of the first session. She petted the horse, learned his name, which is Mac, and was ready to ride. Within the next ten minutes she was typing R-U-N on her iPad. There was not an ounce of fear in her body. I've watched videos and read stories of how riding a horse was completely life changing to autistic children. I'm not expecting a miracle but I really think it's important to have Aubrey in as many constructive activities as possible. It gives meaning to her day and I am able to praise her for the progress she makes. It is another great bonding experience with her.

Today we worked on Aubrey putting plastic cones on top of a pole, throwing a ball into a bucket, and leaning down and opening, checking and closing a mailbox. The goal is for Aubrey to use her core and legs to stabilize herself at all times. Aubrey gets very bored with a task once she has mastered it so it is important for her team to constantly think of new ideas to challenge her. 

Seth was able to join us today which always makes it an even more special time. I want Aubrey to feel supported by everyone in her life and to know we are always there cheering her on!

Autism and Swimming

Today is Wednesday so that means it is pool time with the physical therapist and Aubrey.  Swimming is Aubrey's favorite activity in the world.  Being in a large body of water trumps everything else in life, even the iPad.  The sensory input from the water is the most invigorating activity she has ever experienced. 

Playing in a bath is not something Aubrey was able to experience until she was almost 2 1/2 years old because of her trach.  Once she was finally able to have some freedom in water, she immediately wanted to put her head under and hold her breath. It's one of the most interesting things I've have ever watched her do.  Holding her breath under water came so natural to her.  I assume it is because she was never taught to fear water.  She was never around a swimming pool or lake or anything simply because it was too risky with the trach.   

She started PT after we had been here for about 6 months. She had always had PT services in Las Vegas and I'm not sure why it was not immediately added to her IEP once she started school in North Dakota.  She was definitely still missing developmental milestones but it was completely being overlooked.  I finally called the PT department at the hospital myself and had an evaluation setup.  After the evaluation was completed, it was added to her IEP.  The therapist started with some land therapy but after trying aquatic therapy, there was no going back.  Aubrey was a completely different child in the water.  She moved and used muscles in a way that made it look like she had been swimming for years.  It was obvious that swimming was the ultimate experience for her.  I decided that I would take her to therapy after school once a week instead of cutting into her time in the classroom.  The school would still be covering the cost and it made the most sense to me. 

Today she worked on swimming into the current, placing rings over numbered sticks and catching a beach ball. I am always in the water with her and serve as her safety net because she cannot touch the bottom and needs assistance from one activity to the other.  Her physical therapist is, in my opinion, the best therapist she has working with her.  I can see that she really cares for Aubrey and wants to see her succeed. 

I think it's important to explore new activities in any type of therapy your child is involved in.  Aubrey would probably still be having trouble walking if we hadn't introduced her to aquatic therapy.

How did we get here

 Here's the story on how my life ended up where it is right now. 

I met Seth at a giant party in a park in Grand Forks, ND. At the time, I was in the Air Force and he was in college. We dated for two months before I deployed to the Middle East. It was my eighth deployment and I wanted it to be my last. I was so crazy about Seth and I felt like maybe he was "the one". While I was deployed, it became very clear to me that I was ready to grow up and settle down. I mean I was the ripe old age of 23 at that point so I clearly new exactly what I wanted in life, right? Well I thought I did so that's exactly what happened. The second I returned home, we started trying to get pregnant. Three weeks later, I had a positive EPT. Wow, that was easy! We got married in Las Vegas when I was 4 months along. I was due at the end of June and would be separating from the Air Force in July. We planned to move back to my hometown Mississippi. I wanted a natural birth and planned everything out with my three page birth plan. I was quite accustomed to everything going my way. Not that I was spoiled by my parents but simply because I had always worked hard to make sure things went the way I wanted. I couldn't imagine having a baby would be any different. Reality gave me a big slap in the face at 2:09 am on June 27. My daughter Aubrey was born and her condition was spiraling out of control. She aspirated her meconium, her right lung popped, she needed to be on a ventilator, her blood pressure was unstable.  The list went on and on. What the fuck just happened?!?!! This was not part of the plan! She was in the NICU for 3 days before I got to hold her. Three days with out being able to to hold your newborn baby is basically an eternity. She remained in the NICU for 14 days before we brought her home. I was fortunate enough to be able to stay in the hospital with her the entire two weeks. Bringing her home was so intimidating. By that time, all of our family had returned home and there I was, alone with a new born baby. I had no idea what to do. Seth was working all of the time and just finishing school. I felt like the most unprepared person in the world. When Aubrey was 6 weeks old, we moved to Mississippi. I thought it was important to be close to my family. During the next few months, she was in and out of the hospital. I felt like my life was a giant revolving door of hospital beds, exhaustion, drama with my family, and never having enough money. It was during those months that we learned Aubrey had a chromosome deletion, 16p11.2. The geneticist didn't give us much information and I was just too concerned with her other health issues to worry about it. Aubrey had to have a tracheotomy and that was definitely the most pressing issue. She came home from the hospital with a trach. She was so resilient but in my heart I knew there was something bigger brewing. I knew the lack of resources in Mississippi was going to be a problem and my family didn't turn out to be as helpful as I had hoped. I received a job offer from a company in Las Vegas and I didn't think about it for more than 30 seconds before I accepted it. We had been in Mississippi for 9 months and I knew it was not the place for us. Seth was working for FedEx at the time and it was easy enough for him to transfer locations. Moving to Las Vegas was almost too easy. We were able to find a house and a nanny within two days. Aubrey had a trach but everything seemed to be going really well with her. I had adapted to carrying all of the supplies around and it was becoming a normal part of life. My younger brother had moved with us and he was a tremendous help with Aubrey. Seth was on anything but a normal schedule and I was working 10 hour days. At the time, not working didn't even seem like an option to me. I was still in the mindset that as long as I was home every night, that was enough. It never occurred to me that Aubrey needed me more than I needed work. I kept telling myself that once she had the trach removed, nothing would be different about her. When she was 2, I made an appointment with a geneticist in L.A. I will never forget the car ride home from that appointment. The doctor told me everything that I didn't want to hear. It was the first time that I really got a grasp of how Aubrey's life would be. I cried and cried and cried. It was the first time I had even considered that she may never talk or that she was autistic. I didn't even know what autism was, honestly. I still thought that I should continue working and that someone else should care for her during the day. I was completely comfortable with someone else making the choices about her daily life for me. That all changed when she entered the Las Vegas school system when she turned 3. That's when I finally got it. It was like the light bulb finally turned on for me. This is my child. Her life is in my hands. I need to be most knowledgeable person about her, not someone else. I finally understood in a very deep way that my life was no longer about me, it was about Aubrey. Everything seemed so clear after I came to that understanding. I was no longer going to focus on myself and my career, I was going to focus on being a mother. I could not get her out of Las Vegas fast enough. I wanted her as far away as possible from that broken school district. The night I realized where she belonged was one of the happiest nights of my life. We were visiting Seth's family in North Dakota. We went to the local high school football game and Aubrey was so happy and had such a sense of freedom there. It was in that very moment that I knew she should be raised in North Dakota. Although Seth's family lived here, making plans to move was no easy task. We both had to find jobs and a place to live. He ended up with a great job in a gas plant and I took a job as a paralegal. We moved into his grandmother's farm house and revamped the entire thing. Aubrey started school at Divide County Elementary when she was 4 years old and it is the most amazing place for her. She has a paraprofessional with her all day and now uses an app on on iPad to communicate. I am able to freely go in and out of the school to see how her day is going or to talk with anyone on her team of specialists. I take her to school and am finished with work when she is out of school. I took the summer off from work to stay home with her which has been amazing. Of course we have challenging days. Days of constant hitting  or biting out of frustration. Days that seem like her bedtime cannot come soon enough. The difference is that I am able to be her constant now. I am her greatest cheerleader. Looking back it's so unbelievable that there was a time that I left my child's fate in anyone else's hands. I am so grateful that I woke up and realized that my love for her is what she needs the most.  

The Scoop

Ok so this is not just a blog about raising a child with Autism.  It's about my journey starting at age thirty.  It's about being a mother, dealing with infertility, trying to be an amazing wife and trying to somehow squeeze a second in for myself from time to time.  I want to share my struggles, accomplishments and the daily choices that I make in order to do what's best for Aubrey. 

Aubrey is six years old.  She is non-verbal and extremely full of energy.  She has long curly blonde hair and is like a ball of sunshine bouncing off of the walls, until she's not........

I recently had my fourth miscarriage.  This one happened at seventeen weeks.  Trying to have a baby is certainly the most stressful thing in my life right now. 

I have been married for 6 years.  It has ups and downs like any marriage but is definitely the most stable thing in my day to day life. 

We live in Northwestern North Dakota.  We moved from Las Vegas to ensure that Aubrey was given the best chances of a non-stressful life possible. 

Almost every single decision I make, is based on what is best for Aubrey.  I believe that my job, for the rest of my life, is to ensure she is given the best chance of success.  I understand that it was not my choice to have a child with special needs, but it was my choice to have a child. I no longer wonder what my purpose in life is or what I am meant to do. I know my purpose is to take care of her. 

Follow me on this journey and discover the highs, lows, and in-betweens of a woman trying to simply succeed at life.