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!