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Nurses Are The Rockstars

When I was 29 weeks pregnant with my son Scott, I started having contractions that would not go away. Eventually, I asked my husband to take me to the Labor and Delivery at my hospital. The triage nurse put the blood pressure cuff on my arm and my contractions left, never to return. My blood pressure was super scary high. High enough that they admitted me that night and I stayed in the prenatal ward of the hospital for the next ten days.

In that timeframe, the people who cared for me hour by hour were the nurses. They communicated with me, encouraged me, ministered to me. They relayed information to the doctor and back to me.

I saw my doctor every morning for about five minutes. The rest of my care belonged to the nurses.

After ten days, my body started crashing and Scott’s body started crashing and it became a race to see who the doctor could save first. I don’t think both of us were expected to actually survive the day.  While the doctor made surgical arrangements, one of my nurses came into my room.

She tried to talk to me but was overcome with emotion and just patted my shoulder and cried. I was really concerned for her, so I asked her if I could pray for her and she just started crying harder.

I had an emergency C-section a couple hours later. A nurse held my hand and walked me through the spinal block, making sure I stayed still and calm. She actually had me bent over her, hugging her while the anesthesiologist worked. I will honestly never forget how steadfast she was, how calm, how reassuring.

Once Scott was born, I was put into ICU. But, they’d given me magnesium, and I’ve learned that magnesium turns normally stoic Hallee into a very emotional Hallee. I was hyper, upset, frantic about my 3 pound baby. Finally, a nurse came up to me and grabbed both of my cheeks in her strong hands and put her face close to mine. “Your baby is fine. You are not. If you don’t calm down and trust us to take care of him, you’re going to die.”

I believe very sincerely that she saved my life.

During the next two weeks, we only ever talked to nurses in the NICU. We never saw the doctor. He never talked to us. He was present in the NICU, but wouldn’t come around when the parents were in the rooms. I thought that was very funny. But, we talked to the nurses all the time. My stoicness had returned, and I got to know the nurses caring for our little 3-pounder as if sitting next to them in a coffee shop. I wasn’t the panicked mom who needed reassurance. I was the calm mom who needed information as plainly as possible so that I could process it. They got that. They never condescended to me.  They never made me feel like I should be something or some way that I wasn’t. They just loved on Scott like nothing you’ve ever seen.

Two weeks later, we were transferred out of the NICU and into a room in the PICU. This was wonderful for us because I could room in the PICU with Scott instead of having to go home. The nurses in the PICU were fantastic. They’d come into my room in the middle of the night and watch television with me, hang with me, chat with me. They made me feel REALLY OKAY about our circumstances, almost as if what we were experiencing was normal.

Again, the entire time in the PICU, I did not talk to the doctor except during rounds. I don’t even know if was the same doctor that we had in the NICU or not.

I realize the doctors gave all the orders in these almost six weeks of hospital stay. I’m sure a doctor gave the order to admit me. I know my doctor was on top of my health and well-being during my prenatal stay and that he rocked the surgery and saved us both. I know a doctor gave orders and instructions during the NICU and PICU stays.

However, the rock stars were the nurses. They were the ones in the spotlight, being the face to me of  mine and our baby’s life-giving care. They never faltered. They never wavered. They never acted like the point of their 12-hour shift was a paycheck at the end of the week. Every nurse made me feel important, cherished, a joy to care for and to know.

I will never forget the nurses who were there for us during this unfathomable time. I am so in awe of what nurses do and the way God gifts them to do it. I am overwhelmed at the care that pours out of nurses day after day.

Love on nurses this week. They have so earned it.


Parenting Autism: The Surprising Moments of Overwhelming Emotion

I’m normally a rather pragmatic person. I rarely am overcome with emotion. I handle everything in life with a stoicism that most people cannot understand. My daughter jokingly says I don’t “feel anything” — and longs for memories that don’t exist of me crying through the pinnacle moments in her life.

So, the first time I watched the first two episodes of of the show Parenthood, and watched one of the sets of parents struggle with the diagnosis of their son on the autism spectrum, the overwhelming emotion that had me sobbing into my couch pillow really surprised me.

Really surprised me.

After this wave passed, I sat there, stunned, and wondered what had just happened. As I analyzed it, I realized it was because, for the very first time in this autism journey, I found someone, albeit a fictional someone, who knew exactly what we’d been going through and how I personally felt — even if those emotions were buried deep inside a pragmatic stoic core.

I couldn’t keep watching it. I made it through the first season, but it did too much to the inside of me to keep going.

That was six years ago – right as we were beginning this autism journey and I didn’t know what our future would look like. Recently, I saw that Netflix had it in the lineup, so I rewatched the first episode.  Now, I didn’t end up sobbing into my pillow, but I definitely felt tears slide down my face as those raw feelings of fear and anger and uncertainty felt fresh and new all over again.

I know, in my pragmatic self-analyzing way, that what overwhelmed me was this idea that I’m not alone as a mother, we’re not alone as parents, and Scott isn’t alone as an autistic kid trying to work his way through this world that doesn’t operate properly on his plane of existence. Because, this isn’t an easy journey. It’s hard, and it’s unfair, and we have to work through all of these episodes in his life where he just wants to die because life here is so hard and he’s so very tired of trying to be this triangle peg fitting into a round hole.

Added to the turmoil that comes with that, one day he’s going to be a grown man and every single think we don’t do right could very possibly negatively affect that in a much, much bigger way than it would with our other children — we know this. It is part of this whole life. And we accept it and steadfastly cover him with prayer about it.

One thing that any parent of a child with medical/special needs knows is forms. Everywhere we take our child as it pertains to their diagnosis or condition, comes with a brand new set of forms that all ask the same questions over and over again. And, every time I fill them out, I find that those are the times when my emotions over being the mother of this incredible kid who suffers so much in this world hit me in extreme.

Part of my issue is because I have to fill out form after form, or squiggle pencil marks into little ovals over and over again, as if to claim, “THIS IS WHAT’S WRONG WITH MY SON!”

I don’t want to focus on all the things that are wrong, that set him apart. I want to focus on all of the things that make him remarkable and his accomplishments that supersede all expectations from before. But yet, that’s not what the forms are looking for. So, I start off angry — angry at nothing and no one in particular — just an emotional reaction to something that should be very vanilla.

I’m weird. I know.

And then I start feeling that now familiar overwhelming feeling that we’re not alone in this world. If this question exists on a standardized questionnaire, then someone else must have experienced it, too! Probably lots of someones. And suddenly, the idea that someone out there – this time NOT fictional – understands, can emphasize, could come to me one day and say, “Listen sister, don’t worry. Here’s what I know. Here’s how we rocked it. Here’s how we saw that God had our backs the whole time!”

And I start crying. Me, this stoic unfeeling person who is always taking charge in emotional situations because she’s the one who can think clearly — suddenly I’m sobbing over a stupid form that the therapist or doctor is barely going to glance at because there are enough check marks or squiggly ovals filled in that the answer is obvious.

Not because I’m angry because I have to fill it out again — but simply because it means we’re not alone. I’m not alone. Scott’s not alone.

And someone out there understands.


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Peace That Passes Understanding

Today is our son Scott’s 10th birthday. On this website, I’ve often spoken of the challenges of parenting a child with autism, but I haven’t gone into a lot of details about his prematurity, probably because I had blogged about it so often at Hallee the Homemaker. But, as we close out his first decade, get him his first military I.D., put a double digit on his birthday cake, I can’t help but think back to those weeks 10 years ago that were spent in the NICU.

As I’ve been thinking about it, I couldn’t help but remember the blog post I wrote titled “Peace That Passes Understanding” that I wrote for his fourth birthday. I’ve pulled it out, dusted it off, and thought I’d share it with you.

26-sideApparently, I don’t get symptoms of high blood pressure. I’ve had high blood pressure since Scott’s pregnancy, and still don’t get symptoms. No headache, no spots in front of my eyes (except when I shower), no nothing that would indicate a critical blood pressure. One Saturday night, when Gregg was packing to go to a military school, I started having contractions. I was just over 28-weeks pregnant and on full bed rest. I tried to ignore them, because he should have left that afternoon and by now it was 10PM and he still hadn’t left. I knew if I told him I was having contractions, he would take me to the hospital. I was trying to get him out the door then I would drive myself. However, they picked up intensity until I finally had to say something. Gregg, of course, quit packing and rushed me to the hospital.

The first thing they did was put a contraction monitor thingie on me, which showed the intense contractions every 2-3 minutes. They were so strong, I was panting through them. As the machine started recording, they took my information (I had not pre-registered yet, because, you know, I should have had around 12 weeks left before I needed to be there), chatted with me about how I was feeling, and then put the blood pressure cuff on my arm. The VERY SECOND she strapped on the cuff, my contractions completely went away and never returned.

My blood pressure was 170/120.

I know that God knows that I would have ignored a headache or spots in front of my eyes because at that time in my life, I didn’t even know what that number right there meant. But already having had a child, I couldn’t ignore contractions, and He in His ultimate wisdom got me to the hospital.

Gregg could not stay. He had to be 350 miles away by 8AM. They admitted me.  He kissed me goodbye. I felt nothing but peace.

My good friend, and our pastor’s wife, stayed with me. She spent that entire Sunday, and every day after work (she was a bank manager) in my hospital room. We watched the Sci-Fi channel (you can’t beat uninterrupted Doctor Who or Firefly marathons) or the jewelry channel (I never even knew such a channel existed – she loved watching it) and chit chatted about the Dean Koontz novel she insisted I read. And through it all, I felt nothing but peace.

hallee scott nicuTen days later, on a Monday afternoon, the doctor came into my room. He told me all of my blood and urine work looked good. He said that the insurance company was trying to get the hospital to send me home, and that he had collaborated with a colleague to get a second opinion, which would buy us a few more weeks. He didn’t feel like I could go home, because his instincts told him that once either the baby or I started failing, there would be very little time to react. His plan was to wait until that point, buying Scott as much time as possible in utero before he acted. He then said that he was going to go to the nurses station in order pull up the results from the ultrasound I’d had that morning and would see me tomorrow.

Not five minutes later, I heard the pounding of his footsteps as he ran back to my room. He was actually running.  He swung into my room and, out of breath, asked me how quickly Gregg could get there. When the doctor called him from my cell phone, the answer was, “Let’s see.” (We won’t discuss that it took less than 4 hours to drive the 350 miles.)

us2About that time, my blood pressure started to spike. Alarms were going off everywhere, my friend arrived for her evening vigil and was pulled aside and fed information, and my nurses came into my room with tears in their eyes. One nurse started patting my shoulder and tried to tell me everything would be okay, but burst into tears and had to leave the room.

I guess I was in pretty bad shape.

And yet, all I felt was total peace.

They couldn’t wait for Gregg, though the doctor waited as long as he could. I was scary sick, Scott was scary sick, and they said they’d lose one of us if they didn’t act now. I told them to do what they needed to do.

As they wheeled my bed from my room to Labor & Delivery, we passed a waiting room. I looked over and saw 15 of my friends and church family on their knees holding a prayer vigil for me.

I already felt at peace, but the sight of that flooded me with the most serene calm.

When Scott was born that night, he let out a loud cry. I told my friend, who sat at my head in my husband’s place, that it sounded like a healthy cry and tried to comfort her and convince her that everything was going to be fine.

And everything was fine. Perfectly fine. Four weeks of NICU, Pedicatric ICU, doctors and specialists, therapists and nurses. Four weeks of living at the hospital, pumping my nourishing breast milk every 3 hours so they could feed him with a tube, holding my tiny 3-pound son around the wires and the tubes that any NICU parent knows about — and here we are ten years later and everything is perfectly fine.

This never surprises me. From the first day, the doctors and nurses were surprised every time he made a step forward. They warned us it would be “two steps forward, one step back” in the NICU. But Scott never stepped back. He had been home with us for 6 weeks on his due date, and didn’t even yet weigh 5 pounds.

God gave me the peace that passes understanding (Philippians 4:7). It was a beautiful gift that He gave me. I don’t know how much of my experience would have changed without it, but I have a feeling that the change would be drastic.

scott angry birds birthdayToday Scott celebrates his 10th birthday. There should be a dozen things wrong with him. He should have deafness, blindness, speech troubles, learning disabilities, asthma. He should not be this perfect, brilliant, healthy little boy who thrives. He sees with perfect eyes, he hears so well that he has to cover his ears when things are too loud, he breathes in air with perfect lungs, and his brain astounds me. I never doubted for a second that his health would be anything less.

He is autistic. He has ADHD. And he is perfect and brilliant and the biggest joy a parent could ask for

Happy birthday, my oldest son. I pray that God brings you wonderful blessings in this coming year. You are a blessing to us, and I hope that you always know that and never doubt it for a minute.


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Autism and Emotions

When our son, Scott, turned 5 in July of 2011, he was in the middle of testing and evaluations at the University of Kentucky. By the time the several visits over several weeks had completed, the diagnosis was basically “Far more reaching than simply ADHD”, and they settled on Pervasive Development Disorder, Not Otherwise Specified aka PDD (NOS).

The psychiatrist explained to us that Scott was textbook Aspergers Syndrome (which isn’t a medical classification anymore – but this was over four years ago) EXCEPT that in the IQ test, when the computer screen flashed faces exhibiting emotions by him, he not only correctly identified each emotion, he actually empathized with each emotion — exhibiting sadness over the sad face, smiling at the happy face, etc. The psychiatrist explained to us that children with autism not only can’t identify emotions, they don’t care about them, and therefore, Scott was immediately disqualified from the autism spectrum.

Over the next few years, with much research and study, we’ve actually discovered that children with autism actually feel emotions just like everyone else (I know – it’s a shocker for you parents out there with autistic children – you might want to have a seat – :::insert eyeroll:::). The way the doctor who diagnosed his Autism Spectrum Disorder explained it to us is that what they have a hard time doing, if one were to generalize it, is understanding the subtle cues from peers about emotions. And, oftentimes, have a hard time processing what their emotions mean when they’re feeling them.

I’ve even heard it suggested that, much like sensory input being so much MORE for many autistic children, the emotional input may also be so much MORE, and in a way to block out the “noise” of the emotion, they try to shield themselves from it until it overwhelms and meltdowns happen.

In my blog post An Open Letter to the Waitress at Steak N Shake, I talked about my son Scott’s obsession with the movie Inside Out. I have been noticing lately that when he feels a certain emotion he will seem to take on the persona of the emotions in the movie this movie. For instance, when he feels sadness, he personifies the character Sadness from the movie.

(As you see these pictures of Scott, please note that I did not tell him to act like “Sadness”, I asked him to show me “sad”)

sadness scott sadness

I think one of the reasons that Scott is so obsessed with this movie is because it personifies the emotions for him, in a tangible way he can understand. It really stood out to me one day when he got angry with me and balled his fists and started acting like fire was shooting out of his head.

(I did not ask Scott to act like “Anger”, I simply asked him to show me “angry”):

anger scott anger

Talking to my sister-in-law, who has a daughter with Down Syndrome, I discovered that my niece is also obsessed with Inside Out. She watches it over and over again. My sister-in-law and I both felt like the personification of emotions were what drew these kids to this movie.

(I did not ask Scott to act like “Fear” from the movie. I just asked him to show me “afraid”)

fear scott fear

I LOVE that he has this tangible “thing” now to help him grasp his emotions. Once we realized what he was doing, it gave us a way to discuss how he was feeling with him. Where before he couldn’t express it, now he has found a way to make his voice heard — even if it’s with copying a CGI character from a Pixar film.

(I did not ask Scott to act like “Disgust” from the movie, but to show me how he would respond to something “gross”)

disgustscott disgust

We now have a tool to use so that we can understand him and he can understand us. A way for us to teach him what personal cues with emotions might mean and how he can start reading them.

(I did not ask Scott to show me “Joy” from the movie, but to be “joyful”):

joyscott joy

And that makes me very happy. Joyful, even.

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Autism and Peers

scottWhen we’re in our home and in our environment, you can almost forget that one of my children has a brain that is wired completely differently than the rest of the household. We’re in Scott’s comfort zone, with his smells and his sounds and his lighting. His brother, Jeb, younger by almost 2 years, knows how to play with him and interact with him on his level and with his rules. He seems almost normal.  I’m sorry — those of us with children on “The Spectrum” aren’t supposed to use words like “normal”. I think the term is typical — he seems almost neuro typical.

In our little bubble, parenting him is easy. We have our schedule and our family meals and know how to deal with the no sleeping that comes with the way he’s wired. It’s when we go outside of our bubble and I let him out into the real world that the challenges come.

For two years, we have sought an appointment at a children’s hospital autism clinic. It took over a year to even get on the waiting list, and we finally have an appointment for later this month. In preparation of this appointment, we had to fill out paperwork and his teacher had to fill out paperwork.

I always think I’m steeled against what I’m going to read when I get paperwork back from teachers and professionals, but sometimes, the words are actually painful.

List concerns in the classroom: “Little to no interaction with peers. Seeks one and one interaction with adults.”

Describe the child’s relationships with peers: “Extremely struggles with this. More often than not he is rude and disrespectful.”

With my normal brain neuro typical brain – I can’t fathom a child who has little to no interaction with peers. With my perspective, I tend to think that HE wants it and doesn’t know how to get it. But every parent of an autistic child out there knows that that’s probably not really true. He really doesn’t care. He has his little world. His brother is the one who knows how to play with him on his terms and following his rules and he typically doesn’t need or want anyone else.

It’s only been the last two years that Scott has been able to distinguish boys from girls. From his viewpoint, classmates were just a sea of loud noises and indistinguishable characteristics. He couldn’t even pick his sister out of a group of teenaged girls — we believe they all looked the same to him.

boysLast year, toward the end of the year, his brother had a friend come home from school with him. Scott said to me, “Why can’t I have a friend home from school with me?” I said, “Do you have a friend?” He said, “Yeah, of course.” The friend who came over is also autistic, and the two of them kind of went into separate corners and played apart. At the end of the day they both claimed that it was the best day ever and wanted to do it again.

Scott is starting to be aware of his differences, and he’s starting to not want to be different. I think this is what contributes to the “rude and disrespectful” — he realizes he should have peer relationships because everyone else has them, but has absolutely no idea how to accomplish that and really doesn’t want it. So in trying to establish that relationship, he likely gets a little manic and gets a lot rude. At the end of the day, he’s much happier not seeking out peer relationships and staying on his own.

I don’t know what to do about it. I don’t know how to smooth that out for him. I don’t even know if I should. The only thing I know to do is to continue to provide that safe haven home for him – the place where he knows how it will feel and smell and sound — a place for him to continue to develop coping skills against that great big bad world out there.

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An Open Letter to the Waitress at Steak ‘n Shake

steak n shakeDear Waitress at the Frankfort (Kentucky) Steak ‘n Shake Who Served Us Saturday Night:

As a waitress in a 24-hour sit-down fast-food restaurant, I’m sure that you get a lot of odd requests — especially from harried parents dealing with children in a visually stimulating (black and white checkered decor), cold, audibly loud environment. But, I have to tell you, you handled our table with grace and calmness that belied the busy dining room.

hotdogWhen we ordered a hotdog for our autistic 9-year-old son, Scott, and explained that the mustard must be made in a squiggly line on top of the hotdog — much like one would see on any picture of any hotdog in any children’s book — you never even batted an eye. You had no idea that if he’d received a hotdog without mustard or with the mustard NOT in a squiggling line in such a loud, cold, visually stimulating environment, it would have likely caused a meltdown for which there may have been no immediate recovering. You just nodded, smiled, said you understood, and brought us a PERFECT hotdog. You made sure the milkshake had a cherry, and brought him a salad as a side to his kids’ meal even though that isn’t the norm.

All in all, you were a fantastic waitress and we had a meal with no issues. As the mother of a child diagnosed with “Autism Spectrum Disorder manifested by issues in reading and auditory comprehension,  issues in interpersonal relationships, and issues in sensory processing with an above average raw intelligence”, I can assure you that many meals out aren’t handled so smoothly, and many waitresses and waiters truly don’t have any desire to cater to the odd requests of one small family.

When we encounter wait staff like you, we always make sure the tip is padded. I hope you were blessed by that.

We had to eat and run in a hurry. We had a meeting an hour away and only had 45 minutes to get there. So, we left and were halfway to our meeting when Scott realized that he’d left his “Joy” toy on the table.

You have no way of knowing this, but the things that are special to Scott are obsessively special to him.

I don’t use the term obsessively lightly.

scott joyJoy is the emotion “joy” from the recent movie Inside Out. We watch the previews about forty-three thousand times a day. His wish list for his birthday this Friday is the entire set of action figure emotions from the movie. Right now, he only owns Joy and she goes everywhere with him – from bed to bath to table to bike, she is in his hand or pocket.

There was no meltdown when he realized he’d left Joy. There was more like an “off” button. His entire body deflated, his face completely fell, and he had no emotion whatsoever. We told him we’d stop and purchase a new one. He emotionlessly said he didn’t want another one.

When we left the meeting at nearly nine that night, we thought we’d try to call your restaurant. The woman who answered the phone told us that they’d found Joy and had kept her for us. The hour-long drive to your restaurant was probably the longest drive in Scott’s life.

When we took Scott into the restaurant to get Joy, we found out that she had been given a tour of the kitchen, and had ridden in the pockets of many staff members so that she could get as many experiences as possible before we returned to pick her up. When you came to talk to us, you told us you had a feeling she was important to Scott and you knew we would come back for her.

I find myself unable to come up with words to express my gratitude for the gentle care you gave our son and his lost toy Saturday night. It would have been easy to ignore the request for mustard, a salad, a cherry, and to just toss the piece of plastic in the garbage when the table was bussed. But, you listened, you heard, and you loved him even though you didn’t know him.

I don’t know if you have any idea of the obstacles he’s going to face in his lifetime. We don’t even know. We’re spending his childhood trying to prepare him and teach him coping skills for surviving and thriving in this dark and fallen world. When we receive little bits of light from people like you, it gives us hope for what the future holds.

Thank you for the joy you gave us.

In Christ,

Gregg and Hallee Bridgeman

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