Guest Post: Sue's Diagnosis Story

I've reached a "discovery" in my life as you'd call it, and I figured I'd start a blog to tell my story and perhaps share some interesting, funny and exciting experiences along the way. Here goes...

 

On Wednesday, March 19th, 2014 I was diagnosed with Asperger's Syndrome. For those of you who look at this and think "huh, what the heck does that mean?" I'll make it simple. It's a part of the autism spectrum. No, it does not mean I'm like "Rain Man" or any of the stereotypical impressions you see about autism in the media. It simply means my brain is hardwired a little differently than most.

 

 

See, I was a little "different" from day one. It became apparent when I was in preschool that I wasn't quite like the other kids. While they would sit and follow the lesson and listen to the teacher, I'd be off doing whatever my heart led me to at the moment. I remember running around, playing in the playhouse, sitting on the slide....I was one rambunctious little kid! My teacher suggested my parents and I meet with a psychologist to look into my hyperactive behaviors. This ended up fruitless, as after a handful of appointments, the doctor lost touch with my parents. I was also a lot more well-behaved starting in about 1st grade after still continuing to "do what I wanted to do" as my kindergarten teacher reported, so no one really gave it a second thought.

 

The rest of elementary school went without incident, and I had no difficulty with my grades. Something still seemed just a bit different, though. I'd try and joke with the other kids, yet there was something that just didn't click. I managed to have friends and acquaintances, however. I just felt like I wasn't always in on some of the things they were. One thing I went through was what I would later learn to be OCD, as I would deal with endless worrying on and off. I'll save this for another post so as not to make this any longer than it's already going to be.

 

Fast forward to middle school. It was then I started to get picked on for my interests, especially video games. Because you know, playing Sonic the Hedgehog at 12 is such an abnormal thing to do...(insert sarcasm)...anyway, I again did very well in school, and was one of the kids the teachers appreciated. I was conscientious and eager to learn. I did begin to recognize, though, that it seemed difficult to remember the things I needed to bring home to complete my homework and I would get things mixed up. I learned of something called ADD, and thought right away, "that's me." Since I was doing well, though, everyone around me was convinced that nothing was wrong. I was a little unique. In 7th grade, I was the kid who sat at the lab table with the animals in my science class. Doing what the other kids did just didn't always appeal to me. I remember learning about peer pressure and why I should avoid it, all the time wondering "why would I want to do these things just because everyone else is, anyway?" There was just something about my place amongst my peers that was a little off, and this would continue to be more evident the older I got.

 

I'll move on to high school. What I observed was that more than ever, I was not concerned with being like the other kids or fitting in. It seemed like the other girls were suddenly preoccupied with how they looked, being "cool," self-consciousness, and what boys thought of them. I stood back, o n the outside looking in, wondering "WHY?" Why is everyone suddenly changing? What happened to when things were simple? Why are they worrying about this stuff if it makes them miserable? A lot of this fueled my OCD as I took it to mean my friends weren't interested in the same things as I was anymore and were moving on without me. To this day, I still can't figure it out. I've never worried about my appearance. As long as the clothes FELT comfortable, what else mattered? So what if they're a little wrinkled? So they don't match. Big deal? My hair doesn't have to be perfect. Makeup? I wouldn't be caught dead in that stuff! You get the idea. I've always been more of a tomboy, anyway. I've also never been concerned with dating or being in a relationship. It's something I have absolutely no desire for. I continued to do well in class, and graduated high school in 2001.

 

Now on to my late teens/early 20s. College went relatively well, and I changed my major from Bio Ed to Social Work after my third year. It was the best decision I could have made. I did notice that I still struggled with what I recognized as ADD characteristics, but I managed to keep my GPA in the high range. I was still the kid who always sat in the front of the class and took care to do my best. I graduated with my Bachelor's in Social Work in 2006.

 

It was when I started working full-time that my difficulties became more apparent to me. I reached a point when after forgetting to do tasks and being confused time and time again, I finally investigated whether or not I had ADHD, as I later learned was the correct term for it. I went to get evaluated, and sure enough, I was right! I started medication and saw a difference right away. It has been very helpful and allowed me to stay "in the zone." I've been working in the mental health and developmental disabilities fields and absolutely love it! I've met a lot of people who are very accepting of me for who I am, and with whom I can relate to.

 

It was about 4 or 5 years ago when I stumbled upon a blog written by my now friend on Facebook, who has Asperger's and was writing about her experiences. Now, I had heard of the disorder when I was about 22, and all I knew was that it was a mild form of autism, and sure sounded a lot like asparagus to me! Upon reading my friend's blog, I started to realize "this sounds a lot like me. I understand this stuff." I connected with her and have been in contact with her ever since, and we share a LOT in common. Through talking to her and meeting others on the spectrum via Facebook groups and in person, as well as doing a lot of research, I concluded that I was most likely on the spectrum. I finally decided to investigate it, and went to the same psychologist who diagnosed me with ADHD just 6 years ago.

He determined that I am indeed on the spectrum, in the Asperger's range as I suspected! What a feeling of confirmation I had after learning that I was right! I'm pretty good at figuring myself out, eh? ;)

 

So this is where I'm at. I have the knowledge that I am where I thought I was after all. I have no shame in telling people about my discovery, and see it as a part of the person I am. I'm proud of who I am, and wouldn't want to be any other way! I wouldn't be me if I was :) 

On the Edge of Normal: My Motherhood Story

My daughter, who is almost 12 now, has autism. She is afraid to swim, so she attends year-round swim lessons. Each week, the teacher asks her to jump in the deep part of the pool: “On the count of three, I want you to jump in, okay? One…two…” She pauses before three, and begins the count again. “One…two…THREE!” Enthusiastic threes aren’t enough for my child on the spectrum. Jumping into a pool means my daughter is going underwater, facing the biggest fear of her life.

Eventually she did jump in—and after resurfacing, she scrambled for the wall, screaming, no doubt traumatized, like the fear had been delivered from her head and born into her body. It broke my heart to see her this way. But this first plunge took her one step closer to feeling normal about swimming, and every plunge thereafter has purged a layer of fear, and will eventually give way to normalcy.

I have three redheaded children. My first child, a girl, was born on her due date with no known issues. Five years later, after many developmental delays, she was diagnosed with autism. My second child, a boy, was born at a healthy weight, with two large marks on his stomach. Three weeks later, he was diagnosed with mastocytosis, a rare blood disorder. My third child, a boy, was born once ounce heavier than his brother, but had trouble nursing. Three hours later, he was diagnosed with a bilateral cleft palate.

As you can see, normalcy isn’t something I deal with as a mother. But it became normal the more I learned about them. Just like my daughter, I’ve stood on the edge of my doubts as a mother, wishing I didn’t have to swim the unknown waters of my children’s diagnoses, wishing I could just have normal. I never expected to have children who had challenges, who weren’t normal in the eyes of the world. Yet here I am, with three differently diagnosed children, treading an ocean of uncertainties with a tide I have no control over, struggling to keep my head above these waters of isolation, confusion, and fear. We all stand on our own “edges of normal” for a while until we are ready to jump into the uncertain waters.

Before my daughter was diagnosed with autism, my mind was clouded with concerns. I wondered why she didn’t smile all the time or make good eye contact. I worried about her delayed milestones. Instead of facing these worries, I tucked each one neatly into the farthest corner of my mind, a hidden pocket in my brain, thinking that if the worries rested there, they might not amount to anything. Besides, facing these concerns might mean my cream-faced, button-nosed redhead wasn’t normal, and I certainly didn’t want that. Normal was safe and predictable, and in my comfort zone.

So I tiptoed on that edge until I was given the first push, or nudge, closer to the edge, by a neighbor who knocked on my door when my daughter was 17 months old. I invited her in, and she sat down on my scraggly thrift-store couch with a very worried look, and said, “I think your daughter has autism.”

 

My hidden brain pocket was ripped open in an instant. Every worry I’d had since her birth was thundering before my eyes, and soon that thunder gave way to rain. Tears, sobs, and big heaving breaths filled that tiny apartment living room. Hugs were shared, and after our goodbyes, I sat with my redhead on my lap for a good hour until the rainfall dissipated. I tried telling my brain that what my neighbor said wasn’t true. Then Google became my new best friend—sometimes it confirmed my hopes, other times, it confirmed my fears. So I said goodbye to Google and kept walking the balance beam between normal and un-normal, and then my second redhead was born.

However, with my new baby boy, there was no teetering on the edge of normalcy. With him, I plunged right in because he developed strange symptoms after his birth. Several times a day, his entire body would slowly turn red, like he had a horrible sunburn, and the marks on his stomach would blister. This wasn’t normal at all, and I knew it. I was a mom on a mission, and when the pediatrician couldn’t figure him out, and the dermatologist was booked solid for months, I had to do more. When Googling and calling and pleading and begging and crying were getting me nowhere, and my infant boy continued to exhibit these frightening symptoms, all I had left to do was pray.

And the very next day, my prayer was answered when I got a phone call from the dermatologist, saying they had a cancelation. As I drove to the doctor’s office, I thought about how my child’s un-normal symptoms could only be made normal by one thing: a diagnosis. I was willing to go to any lengths for answers because his life was on the line. The dermatologist took one look at my newborn and declared “mastocytosis” the cause of all his symptoms—and my new normal was defined with one word. Though I was scared of what lie ahead for him, at least I wasn’t treading in uncertain waters anymore. I could move on normal because I had moved past the unknown.

And so while swimming in the calmer seas of certainty with my newborn son, I had to jump out at times and prance around on that normal edge for my daughter, because I had no answers for her. Then I got my next push toward the edge, this time from my mom. She gave me a book, which I devoured and highlighted and dog-eared and margin-scribbled. Then came an official diagnosis of sensory processing disorder, and the following year, the autism diagnosis.


I stood looking out over the edge into the giant ocean of autism, and had no choice but to jump in. And while treading the choppy waters of a fresh autism diagnosis for about a year, I finally set foot on an island of self-discovery: maybe she wouldn’t be considered normal to everyone else, but she’s normal to me because she’s mine. This was going to be my new normal—I could either embrace it or be afraid.

Like my daughter’s fear of water, un-normal things can’t be normal until you face the unknown and accept it as truth, as reality, as your inevitable life. You have to jump in all the way.

But you know, swimming is exhausting, so my husband and I waited before having another child—better to stay afloat than to drown. And when life felt normal again, our own kind of normal, where we could at least touch our toes to the sand, we discovered I was expecting for the third time. So, hoping to put all un-normal behind us for good, we decided to pray every night for one thing during this pregnancy: a normal, healthy child.

Sometimes prayers aren’t answered the way you expect. When our third redhead was placed in my arms and had trouble nursing, and the doctors whisked him away for observation and kept him for many hours, that familiar feeling crept into the hospital room: un-normal. I didn’t like having that feeling again. I had just tossed it behind us, praying it would never come back, but it did: a team of doctors came back to explain that our new baby, just a few hours old, was born with a birth defect, a bilateral cleft palate, and would need surgery to correct it, and would not be able to breastfeed.

A birth defect? A surgery? But we prayed! We prayed every single day! How could this happen? Oh, why did we pray for normal?

We stared at the clock ticking, listened to the monitors beeping, felt the cold of the steel beds and tile floors, breathed the scent of alcohol and soap, and didn’t say a word. Once again, normal had evaded us. But this time, it was going to be different. I was prepared, because un-normal was something I had experience in—after all, I’d done it twice before. I was beginning to think that maybe, just maybe, there was a reason why these special babies came to us, to me, to be their mother. Three out of three had to mean something.

So when the doctors were puzzled as to how to get our newborn to eat, I noticed that he could keep a pacifier in his mouth, even though cleft palate babies lack suction. I suggested that we attach a small tube to a syringe, and feed formula into his mouth as he sucked on the pacifier. It worked. The team of doctors was astonished. “How did you think of that?” They asked. “I’m not sure…it just came to me. I’m his mother,” I replied.

He was kept in the NICU the first night, but once they saw how well I was feeding him with the syringe, they let me keep him in my room. By the third day, one of the doctors said to me: “I’ve never seen a mother so confident in her ability to care for a child with a cleft palate so early on. Usually, the babies are kept here for at least a week. How did you figure it out so quickly?” I don’t remember what I said, but if I could answer him right now, I’d say: “I’ve already swam a lot of oceans with my two older children. This new one seems more like a jump in a puddle.” We took him home after a normal hospital stay of three days. Did you hear that? Normal.

So I ask you, what is normal, anyway? Who can define normal? Normal for whom, compared to what? Doesn’t what you’ve been given become normal once it’s understood and accepted? Normal is so relative. I might have teetered on the edge of normal in the beginning, because facing uncertainty is difficult. It wasn’t until I let go of my idea of normal and made the jump into that vast ocean of my fears that things became normal. And after what I’ve been through, I must say, I’m a really good swimmer now, too.

 

National Love Your Red Hair Day!

Today is the first annual "National Love Your Red Hair Day." How do I know this? Not because I have it on my calendar, but because about five people tagged me in an article on Facebook saying it was. Pretty much everyone knows us as the redheaded family. My Facebook page, "The Special Reds," is dedicated to my three redheaded children, each born with a unique challenge. So my kids stand out for two reasons: 1, because they have red hair, and 2, because they have rare diagnoses as well. They're also EXTRA rare because apparently, red hair and blue eyes is unique, and they each have that combination.

I'm going to let you in on a little secret: all redheads belong to a club. An exclusive club, that only redheads and relatives of redheads can be part of. How do I know this? Because I have three redheaded children, and believe me, they attract a LOT of attention. And every time I go anywhere with one of them, I hear things like this from strangers, (who are most likely part of this club):

"Oh, love the red hair! My [insert name of relative, be it child, grandparent, uncle, second cousin, stepson, ex-wife]. Let me tell you about this person..." And it's at this precise moment that I always wish I could hit a record button, because I have heard so many "redhead" stories that I could fill a book.

Here are some common things I've heard over the years:

"Oh, love that red hair! Mine used to be red when I was younger. Now you can see I've got none!" [insert loud burst of laughter from older gentleman.]

"Oh, just look at that red hair! Oh, my mother had red hair, and when I had kids, I always wished I could have gotten just one redhead, but I didn't."

"Oh, you have a redhead! My hair was red when I was younger. And when I went gray, it went pink instead of white!"

"Oh, I love your child's red hair! My son had red hair, and he never liked it. I always tried to convince him that it was cool to be a redhead."

"Would you look at that hair? (not talking directly to me, but behind me, to his/her companion) I've paid a lot of money to get that hair color!"

"Wow, that's some red hair! Let me guess, you dye his hair to keep it that way?"

I've heard this joke so many times that now I tell it to others. The last time someone said:

"Oh, would you look at that red hair! Love the color!"
"Yes, thanks! I take him in every 6 weeks for a touch up!"
This usually brings either a laugh or a confused look. Sometimes I have to tell them I'm joking.

Being a redhead is like wearing a badge of honor. Red hair means you stand for something, that you have to be bold and proud of who you are. It means you will always hear comments from strangers everywhere you go, and that's okay. And these strangers, most of the time, have a relative with red hair. I rarely hear someone comment on my child's hair if they don't have a redheaded connection. It's all about the connection, being in the club, sharing their own redhead story.

Unless this stranger wants to know the answer to the #1 question I get:

"Wow, that's some red hair he's got! Is it true that redheads have tempers?"

And every time I hear this one, I answer truthfully:

"Yes, yes, yes, it is true. Redheads do have tempers to match." (I know this from experience.)

And this has to be the #2 question I get from people:

"Oh, I like his red hair! (person looks at the hair on my head) But where did the red hair come from?"

Now this question happens the most when we are out as a family. I have what you would call auburn-ish hair. I don't color it, and in the sunlight, you can see red glints. But I do have lots of freckles and fair skin like most redheads do. My husband is also fair and has dirty blonde hair, and if he grows his facial hair, it is red. So most people look at us and then see these three redheaded children and can't figure it out. (These people probably aren't part of the club).

Well, do you want the long or short answer? Here's what I usually say:

"Well, both our parents have red hair, and two of my dad's sisters have red hair, and my mom's sister has red hair, and my husband's brother has red hair, and my granddad was a redhead, and..." Genetics, people. It runs in the family! (I'm considering dying my hair red to avoid the question.)

Oh, there was also one time where someone told me if you rub the hair of a redhead, it's good luck, and the person actually rubbed my child's head. You just never know what might happen.

So here's to all the redheads out there, who feel connected to other redheads simply by having the same hair color (or having relatives that do) and who feel compelled to talk to other redheads wherever they go. What other hair color would start a national day? What other hair color would have a redhead convention every year? What other hair color would cause strangers to share their entire genealogy while standing in a supermarket checkout line? Only redheads. I feel proud to be a mother to three beautiful redheads.

(And by the way, please don't call us gingers. I personally cringe at the sound of the word. We are redheads.)

Redheads unite!