[Guest Post] Autism Awareness: Different... Not Less

This is For.the.Love's first guest post, and I am SO excited to be able to share it. 

I got my first sister when I was 19 years old. My brother fell in love with Alexandria Davis in 2007, and the rest of us quickly followed suit. I am so blessed to have this woman in my life! Alex is an incredible and loving wife, a remarkably patient and devoted mother, an amazing sister and a true friend.

Since my nephew's diagnosis, Autism Awareness has become very dear to our family. I am so happy to be able to offer my brother and sister-in-law my platform to share their experience. I am so proud of them and their willingness to openly share their new adventure. Nixon is amazing and his Autism makes him even more amazing. We are all so proud of who he is.

I have known about Autism since I was in high school. I remember meeting my Uncle’s best friend and her daughters (one of which has Autism) when I was in 9th grade. That was the first time I really remember hearing about Autism and got to see up close and personal just what Autism looked like. Years later I started babysitting for a family who had a gorgeous little girl who was later diagnosed with Autism. I had seen it, I had read about it in Child Development classes, and I thought I had a pretty good idea of exactly what Autism looked like. What I didn’t realize was how different Autism looks on different people. What I didn’t realize was how vast the Autism Spectrum truly is, and how it affects the whole family, not just the child with Autism. 

Nixon Gregory was born on May 10th 2013. He was chubby, squishy, had a full head of jet black hair, and he was perfect.  It seemed like I was pregnant for half my life, so I was excited and relieved just to have him with us. The day after he was born, we found out he had a pretty severe bacterial infection and had to be placed in the NICU at CHOC (Children’s Hospital Orange County) for 10 days on antibiotics. After the 10 days were up, we got sent home with a perfectly healthy adorable baby boy. 

From the day he was born he was one colicky baby. Most days it felt like the only time he stopped screaming was to eat and sleep. All the tricks in the book would only work temporarily for Nixon, and then he would be back to screaming. Finally around 12 weeks it started to get better, and then he started cutting his first two teeth. It seemed like I would never get rid of the permanent bags under my eyes, and I was right. He was healthy, gaining weight and growing appropriately, and we had moments every day when he would give me a tiny smile or giggle, and it would power me through the rest of the day. I was constantly worried that Nixon wasn’t sitting up, or smiling, or engaging with Jason and I, but all my family and friends would help put my crazy-first-time-mom mind at ease.  

When Nixon was 6 months old he had a developmental check back at CHOC (they do this with all of their NICU babies) and he had some minor developmental delays, but was still on the low end of normal, so they said they weren’t too concerned about it, and gave me some hand outs of developmental milestones from 0-36 months.  I practiced peek-a-boo, getting him to babble at me, or even show interest in toys.  Around 8 months Jason and I really started to wonder about Nixon when he still wasn’t playing with us, still wasn’t making any sound (except giggles and crying), and still wasn’t crawling.  We started researching early signs of Autism around this time, and the biggest “red flag” for Autism is lack of eye contact.  Nixon had, and still has, pretty good eye contact so we weren’t sure if it was Autism, or maybe something else. Maybe we really were just paranoid, first time parents. Maybe it’s something we were doing, or not doing, at home. Maybe if we just practiced peek-a-boo a little more, or did more outside activities. Maybe if we pushed him a little harder, he’d get it. I can’t even count the number of times we have heard, “all children develop differently” or, “boys just take a little longer” and it’s 100% true, but as parents, our gut was saying otherwise, and the word Autism was stuck in the back of our minds all the time.

At 12 months old, I voiced concerns about Nixon’s development to our pediatrician at the time, and she brushed them off, pointing out that Nixon had great eye contact and reminding me that boys typically take longer to start talking than girls and that he was just taking his sweet time with walking. I was frustrated, and again felt like I was just being crazy, so I brushed it off. 

Fast forward to 18 months, I voiced concerns yet again to Nixon’s pediatrician about how the only change in 6 months had been that he was now walking, and babbling “mama.” It didn’t necessarily mean Mom, it was just his general word for everything; food, movie, hold me, etc.  She said that she wasn’t really concerned, but if I was, to make sure to bring this all up at his 18 month developmental check back with CHOC the next week. 

When we got to CHOC, each of the specialists that saw Nixon almost immediately started taking notes, and before I could voice my concerns about Nixon’s development, they were asking me questions and giving me questionnaires to fill out. I knew these questionnaires were Autism screening questions from all of my paranoid research over the last year, but nobody said a word about it. Nobody wanted to drop the "A" bomb.  When his evaluation was over, they told me that Nixon was “severely delayed” in all areas of development. They gave me a packet of numbers to call and referrals to get started on immediately. It seemed like so much to take in all at once. I was upset, overwhelmed by all the information, relieved, and feeling a little defensive. I remember telling my family that I thought that was a harsh judgment since they only saw him for a short time, and that I knew he had delays, but I didn’t think they were "severe" as the doctors were saying.  Part of me was offended that the doctors were telling me that my child was not “perfect,” and part of me was relieved that someone else was concerned about the same things that Jason and I were concerned about. 

The next couple of months are a blur of appointments, 30 page surveys, and so many evaluations.  Since Nixon was “flagged” at such a young age, a surge of services began for him almost right away.  Within a few weeks he was being evaluated for occupational therapy, speach therapy, and behavioral therapy. He started all three maybe a month after he was evaluated, and we never looked back.  

How grateful we are now that he got such early intervention. Within a few months, he was starting to talk, he was able to sit down and attend a task for 1-2 minutes at a time, and his motor skills were slowly beginning to improve. We were so pleased that we were seeing results, and that our boy was coming along so quickly. At the beginning, it was stressful having so many new places to be, not having all the free time in the world to play the way we wanted, go wherever we wanted any time we wanted.  But looking back, those days were somehow easier. Maybe because it seemed like it was just a temporary phase in our lives and that it would eventually end. We thought, maybe Nixon just needed a little jump start with speech and fine motor skills, and we would move on. The thought of Autism was still lingering in the back of our minds, but we didn’t really grasp what it would mean for us.

The last year has been one wild ride. I remember his first behavioral therapy evaluation so clearly.  They observed Nixon and asked me questions for almost two hours, and when it was finally over, they told me that Nixon displayed a lot of “red flag” or “Autistic-like behaviors,” but that being only 19 months old at the time it could really go either way. The Behavioral Therapist told me that in the next year/ year and a half we could see these behaviors completely drop off, but that new ones would likely pop up.  She said that the most characteristic signs of Autism, like lack of eye contact, were not apparent in Nixon, but that other signs were. The results came back 50/50, so we really knew nothing more when we left than we had already known going in. Legally speaking, because Nixon didn’t have an official diagnosis, none of his therapists could say specifically that we were working on some of his “Autistic-like behaviors.” The A-word was this horrible secret that nobody could talk about. They would say things like, “with kids like Nixon…” my personal favorite, or “this is something that we find useful with kids on the spectrum.”  It drove me crazy, but at least we were getting him the help he needed to improve and grow.  We spent over a year in this obnoxious limbo of knowing, but not really knowing. Diagnosis isn’t done until, at least, 2 years old and the rings of fire you have to jump through to get a referral for a specialist who does Autism diagnosis are endless! Not-to-mention the 6-12 month waiting list you get on just to be seen. It was mayhem. But somehow we made it to the pediatric neurologist when Nixon was 2 years and 8 months.

On January 18th 2016 Nixon was diagnosed with Autism Spectrum Disorder, and classified as High Functioning. Jason and I were more than prepared to hear the words, and almost relieved when the words finally came out of the sweet neurologist’s mouth. Something we had known, for what seemed like forever was now official. We had the words, on paper, and we could finally move on, and have a clearer picture of what the future would be like for us. 

High Functioning or Mild Autism can be tricky, because in most ways these people seem so typical, but the struggles they do have can be absolutely crippling. We have heard the sound of shock in people’s voices when we have told them that Nixon has Autism so many times already, and I’m sure it will only continue to happen. We will likely hear, “But he looks/seems so normal” or, “REALLY???” for the rest of our lives. 

Nixon has a combination of symptoms. He has difficulty with loud noises, and he is constantly jumping, spinning, or throwing himself into things to satisfy his sensory needs. He has poor fine motor skills and is very clumsy, but he has an amazing vocabulary and constantly improving communication skills. He even regulates his emotions better than some neurotypical kids his age.

  Autism is so specific to each individual affected by it, and a lot of people have no idea what High Functioning Autism can look like. Unfortunately, a lot of children with High Functioning/ Mild Autism are mistaken for poorly behaved, rude or weird, but there’s a lot more going on than you may see on the outside. 

Autism Awareness month is all about spreading awareness about ALL kinds of Autism. Autism is not a one size fits all diagnosis; it is fluid and ever-changing and, one thing I know for sure, is that Autism can be a beautiful thing too. Nixon’s brain works in the most remarkable ways, ways that typical minds don’t, ways that we may never fully understand, but I know that Nixon will do amazing things. This journey through Autism may be a constant battle, but I wouldn’t change it. 

-Alexandria Garrett

For more information about High Functioning Autism and what it may look like:

 http://www.myaspergerschild.com/2013/04/list-of-symptoms-for-high-functioning.html

When dark clouds of trouble hang over...

The storms come. The clouds roll in, dark and menacing. The rains beat down on us. 

And our tears quickly follow suit.  

But just as real storms roll away, revealing the sun again, so do the storms of life. The darkness dissipates, our tears dry and the Son is revealed. The Son of God shines brighter than any darkness.

When I feel drenched in the storms of grief, I can feel the warmth of my Savior wrap me up and pull me into the light again. Sometimes it takes me longer than other times to feel it and let His grace save me. I don't know why. If I know what I know, if I know His grace will save me, I don't know why sometimes I take longer than other times to turn to His comfort. I think sometimes we just start to drown in our grief, and we lack the will to work our way out. But, however long it takes me, I always find my way back to the surface; to the grace of my Lord. I am surrounded by His love and compassion. I am freed from the burdens, grief and pains that weigh me down. 

But, you see, it takes some effort on my part. I must choose His light. I must trust His grace. 

If you choose to sink, if you choose not to try, then the Lord cannot help you. He cannot make you do anything you do not want to do. One of God's greatest gifts to us is our agency, our right to choose. He will never force us to turn to Him. Our faith must remain in Him. And if we trust in His goodness and have faith in His plans He will gladly comfort us when we ask. 

"May we choose to build up within ourselves a great and powerful faith which will be our most effective defense against the designs of the adversary—a real faith, the kind of faith which will sustain us and will bolster our desire to choose the right. Without such faith, we go nowhere. With it, we can accomplish our goals... if we choose Christ, we will have made the correct choice." Thomas S. Monson

We just have to ask. We just have to choose Him. 

As the hymn goes, "When dark clouds of trouble hang o'er us and threaten our peace to destroy, There is hope smiling brightly before us and we know that deliverance is nigh."

With faith all is possible. With faith in the Savior and the power of His atonement we can break free of darkness and find shelter from the storms.

XO.

We are never alone in our grief.

How do you heal grief? It's not something that can be covered with a band aid. I fee like it is a deep, gaping wound that always aches. And just when you think that it is starting to get better, that it is starting to heal, it breaks open and starts bleeding all over again. 

Sometimes it's in the car. Sometimes you are driving and nothing in particular happens that you'd think would spark something, but suddenly you're pulled over on the side of the road gasping in tears. Or you're just making the bed in the morning and you lose it, and you ugly cry there on the floor in a heap of blankets. Or you wake up in the night, and you swear its all been a dream, and you think you can go to the hospital and he'll be there waiting. And the would bursts open again when you realize it has all been so real. 

So, do these kinds of wounds ever just become scars? Will we ever stop bleeding?

For a while it really did feel like things were getting easier. Like there were more good days than bad days... but then it turned. The days feel harder now. Just last week, I actually woke up in the middle of the night so confused that I almost called the NICU to check on Max. That hasn't happened since the first couple weeks after he died. I feel like I just miss him so much more suddenly. 

People stop asking about him or talking about him. And I think it's because they are afraid to bring him up, but I desperately want to talk about him. I had this amazing, beautiful boy and I only got to show him off to a few people, and then he died and its like everybody got nervous to bring him up. But I just want to talk about him, to remember him. He's my baby, my world. Everyone else gets to take their babies everywhere and show them off, and show that they're sitting up or cutting a tooth or starting to laugh, and my baby isn't here, but I still want to tell you about him. 

In the beginning, I could feel his spirit around me all the time. He walked every step with me. I could go in the nursery and rock next to the crib and close my eyes and feel him. But as time goes on he's here less and less. I know he has work to do in heaven, and I'm sure he has some amazing and important, incredible work to do and he doesn't have time to babysit his mom anymore. But I'm selfish, and if I can't hold him in my arms I just want to feel him near me all the time. 

I want to see him, cause I know he's perfect now. At last, he has two perfect eyes and a perfect mouth and perfect feet, and I want to see it. I want to see if he is strawberry blonde like me, or if he has flaming red hair like his daddy. I just want a glimpse of him. I just keep hoping that if I'm just good enough, if I can just be faithful enough maybe God will let me see him, maybe He'll give me just a little glimpse of him. Maybe that would help heal my grief... or maybe it would just make me miss him more? I don't know, but I still want it. I'm human and I'm his mother and I am sad. I miss him.

I'm sorry, folks, this is not an uplifting post. This is not what you come here for. But, today, this is what you get. You get the real deal today. I'm not super human. I am not perfect. And some days I am just broken. But I won't stay broken and I do NOT feel hopeless, because when I am pulled over on the side of the road gasping in tears, or when I fall apart making the bed, or when I lose it over his grave I feel the Lord wrap His comfort around me. I see the atonement of the Savior go to work in my life, and I know I am never alone in my grief. And you are never alone in your grief. We are never alone. The grief is real and it sucks, people! I will never tell you it doesn't, and I can't pretend like every day is sunshine. But you hold on to the days that are, and you hold on to your faith when the storms roll in, because it somehow gets better. I promise you that we never go through any of it alone. 

XO.

Constant, Unconditional Faith Through Adversity.

Let's be real, folks. Life is freaking hard.  

No one is exempt from hard things, no matter what their life looks like on Instagram. So, don't ever think that you are the only one suffering or that you have been singled out. And don't compare your trials to anyone else. What may not seem difficult to you is breaking someone else down. And the trials you are handling and getting through might be torture to someone else. We are not meant to judge one another. We are only meant to love and respect one another, and feel for one another.
Trials are a necessary part of life. Unless you figure that out, your life is going to be even harder. Accept the adversity that comes. Face it, feel it, grieve it, embrace it, work through it and overcome it so you can move on to the next hurdle. I know, that's a lot easier said than done.

I've endured depression and anxiety, I've battled an eating disorder, my heart's been broken more than once, I've seen people I love most suffer in countless ways, I've struggled through infertility and miscarriage and I buried my sweet firstborn son. It's not like my life has been "perfect," and neither has yours. No one's has. That's my point. You have your own laundry list of trials, and I am sure I wouldn't want to trade for yours. 

I'm not going to pretend that whatever you are going though is no big deal or that your hurt or your grief isn't valid. We are human and we just don't see the big picture. But here is what I know. I know that whatever your trail is it won't last forever, "Peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment..." and something great awaits you, "And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes." (Doctrine & Covenants 121:7-8)

Enduring it well. That is the hardest part, right? When everything feels so wrong, so unfair, so not worth it- how can we endure it well?

My answer is and always will be: faith. Faith in all things. Constant, unconditional faith. My faith is in my Father in Heaven and in His son, my Savior, Jesus Christ. I know they love me in a complete and all-encompassing love I cannot even comprehend. Since I know that, I know that none of my difficulties in life are a result of cruelty. It is only in The Lord's nature to offer us the best. I have faith that every hardship I endure, or you endure, is to make us stronger and better. Through the things I have gone through I have become a more compassionate, understanding and just a better person. I have a strength in me now I never knew I could possess. None of my trials have ruined my life, because all those hard things have brought me my greatest blessings. If not for those trials, I wouldn't have the things I love most. 

Trials and tribulations always precede incredible blessings. God is good. He loves us. He wants to bless us! We just have to have faith and patience. If we don't endure well, if we despise our trials and see them as curses we will never notice our blessings. 

Spencer W. Kimball said, "Being human, we would expel from our lives physical pain and mental anguish and assure ourselves of continual ease and comfort, but if we were to close the doors upon sorrow and distress, we might be excluding our greatest friends and benefactors. Suffering can make saints of people as they learn patience, long-suffering, and self-mastery."

Our trials are not our curses. Through these sufferings we are made strong. The Lord is not punishing you; He is preparing you. Have faith through the storms. Clear skies are ahead.
Trust me, this is still a good life.

XO

God created us to have JOY!

Life in the wake of loss, any loss, is not easy. There are great days, cant-get-out-of-bed days, okay days, and days you can't believe any of it really happened.

There are plenty of mornings I wake up wishing it all was just a dream, and that I can go to the hospital and Max will be there waiting for me. The reality that he is really gone is sometimes an overwhelming pain. I miss him every moment.

January was crazy busy with phone calls and paperwork. I spent every day trying to get insurance, social security and other things figured out. It weighed on me, but it kept me busy. I had purpose each and every day. I still had things to do for Max. But when February came it was like a hit of reality. As things began to work themselves out, and I had less of that stress to do, it became more and more real that Max was gone. This is my life now: a life without Max. 

Two days before Valentine's my old 1996 Jeep Cherokee died. She was only a few thousand shy of 200,000 miles. As we looked for a new car I remembered how we had begun this journey last summer with excitement and anticipation of a new baby. But here we were, 7 or 8 months later, finally, driving home in a new car with no baby in that back seat. Part of us rejoiced to have a car that wouldn't break down all the time, that had A/C, working windows and doors; but the majority parts of us just wanted to park our beat-up Jeep in Primary's parking garage and be back in the hospital with Max.

The day before Valentine's I went to the store to get flowers and a balloon for Max's grave. I stood in the checkout line, tears rolling down my cheeks, while the mother in front of me scrambled with her kids and their Valentine goodies. We went to dinner and a movie that night with our friends, and my heart broke inside knowing they would hurry home to snuggle their baby boy. I sobbed in the car as we drove home, thinking of my brother-in-law's family having their Valentine's date at home with their son. I felt so much distaste for my life that night. I wanted my baby back. I wanted him in my arms. I wanted what everyone else was having. I did not want this life!

The sorrow consumed me, and I felt as though I had forgotten all the important truths I knew to get me through this.

Well, as He does, the Lord found a way to remind me those truths in church the next day.

My mother-in-law, actually, gave a lesson that day that brought me back and filled me with hope again. She shared Dieter F. Uchtdorf's story A Summer with Great-Aunt Rose, which is about a young girl named Eva who is sent to live with her single great-aunt one summer. Rose has never married and has never had children, but lives an incredibly happy life. Despite the things she doesn't have, she is fully aware of everything else she has been blessed with. She explains to Eva that she hadn't always been so happy with her life, though. Just as I had been swallowed up in sorrow for things I did not have, so had this great-aunt Rose. In the story she tells Eva how she was able to find joy:

“Faith,” Aunt Rose smiled. “I discovered faith. And faith led to hope. And faith and hope gave me confidence that one day everything would make sense, that because of the Savior, all the wrongs would be made right. —I could hang my head and drag my feet on the dusty road of self-pity, or I could have a little faith, put on a bright dress, slip on my dancing shoes, and skip down the path of life, singing as I went... Yes, I had some dark days, but all my brooding and worrying wasn’t going to change that—it was only making things worse. Faith in the Savior taught me that no matter what happened in the past, my story could have a happy ending.”

In this story, and the spirit of that church meeting, I was reminded of my faith. My life without Max did not have to be filled with sorrow. Yes, I will feel the pain of his absence, but I will also be filled with love from faith in my Savior, because "God didn't design us to be sad. He created us to have joy!" (Uchtdorf)

Just because we suffer hardships and trials during life does not mean that it has to define us. It does not mean that we have to be broken forever. Our God is merciful. He loves us endlessly and, even though we have to endure hard things, there is always so much in our lives to be grateful for. There is still so much that can bring us joy.

Despite the things I cannot have right now, I was made to have joy. Ya know what brings me joy?

Long drives through the mountains with Tyler. 

Videos and pictures of Max.

Talking on the phone with my mom.

Playing with my nephews.

When Tyler makes funny faces.

Cuddling with Tyler and binge watching TV shows on Netflix.

The view of Ben Lomond Peak from Max's grave.

Writing.

Reading.

Living in Ogden, which I think is absolutely one of the most beautiful places!

The deer in our yard.

Shopping.

Watching Friends.

Laughing with my girlfriends.

Chocolate.

Diet Mt. Dew.

Going to the temple every week.

Attending church.

Speaking with God through prayer.

Reading the scriptures.

...And so many other things!

See, my life is filled with JOY! So, from now on, when I get sad and forget that I will look at this list and add to it. I encourage you all to make a list of the things that bring you joy and remind yourself of your blessings.

Remember who you are and who made you, and that He CREATED YOU TO HAVE JOY!

xo.

All that is left...

So, yeah, I'll admit it... I gained almost 50 pounds during my pregnancy (and I only got to 34 weeks). YIKES! Right? Oh well. I ate as healthy as I could, but never exercised. For the first 15 weeks I felt miserably barfy and after week 18 I always felt like Max was going to fall out. So, yeah I didn't ever really feel like doing any jumping jacks...

I'd be lying to you if I said the weight gain wasn't hard on me. Weight is a struggle for me, even after 7 years in ED recovery. Thankfully, my mom was right, and most of that pregnancy weight comes off right away. Its that last 15 pounds you need to lose to button your pre-pregnancy pants that is a nightmare to get off! 

Initially, the changes to my body were difficult for me to accept. The 5 inch bikini cut scar and the purple, scraping stretch marks from there to my belly button were hard to ignore on my naked body. At first, I had a really hard time seeing the beauty in it all... until Max was gone.

 With Max gone, these scars are all that is left. My body remains as the only physical evidence that he was here. And now as the stretch marks fade, I find myself hoping they will never disappear. My scars are a reminder to me of carrying a child, of carrying my Max. Until him, I never knew for sure that I would ever carry a pregnancy to term. I don't have the baby in my arms, but I have the scars to prove I did. Now, I look at my abdomen in awe of what my body was able to do. I look at that horizontal scar and those rake marks stretching up my belly and think of how Max once grew, lived and moved inside me. I think of how I was cut open and he was carefully and quickly pulled to safety.  

So, now, I look at these marks with love. They are so special to me! I look at these marks, and I am so grateful to be a woman. I look at these marks and I know I am a mother. 

So, dear mothers, be grateful for your marks. Be grateful for the scars that make you a mommy- whatever those scars may be! The stretch marks, the surgery scars, track marks from all your blood draws, or the scars from all your shots. Be so grateful for the physical marks left on you and remember when you hold your baby close that, for some mothers, those scars are all that they have left.

xo.