Friday, May 18, 2018

Special Needs Spotlight || Fritz + Marina

Hi! My name is Nicole. My husband Rick and I have two children, Fritz (17) and Marina (15). We met each other over 26 years ago at Iowa State University, and have been married for 21. After living in Illinois for several years after getting married, we have lived in Knoxville, Tennessee the past 13 years and consider this “home”. While I stay-at-home now, I taught Elementary School until I had Fritz. Having both of our children on the Autism Spectrum has taught us A LOT about love and what is TRULY important in life!

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Miggy: Welcome Nicole! I'm so excited to be featuring your beautiful family today. As usual, let's start at the beginning. As we are talking about both of your children, can you take me back when you first knew started seeing "red flags" with your kids? And at what point were you finally able to get a diagnosis? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Nicole: I had a wonderful pregnancy with Fritz! The only “bump” we had was during delivery when he had Shoulder Dystocia (he was a big baby for me!!) As a first time mom, I didn’t have another child to compare him to. He was happy and engaged, but as he approached his first birthday, his lack of language was the “red flag” for us. We searched for answers. The news was just beginning to report on the increase in Autism diagnoses, so we thought we would check with "experts." Pediatricians said he wasn’t on the Spectrum. Speech therapists said “no” when we asked their opinions. His Occupational therapist said that while he possessed some traits (not pointing, not waving, etc) that he was too “happy” to be on the Spectrum. Everyone gave him the diagnosis/label of language Impaired, apraxic or Sensory Integration Disorder. So we tried to calm our hearts and believe that was the truth.

I remember exactly when my life changed forever though… Rick, Fritz, and I were heading to the airport to visit friends in Ohio. We had Fritz (who was almost 18 months old) beginning Early Intervention therapy in Chicago because he wasn’t talking. As I was walking out the door, the phone rang. My doctor was on the phone stating my AFP test (I was about 4 months pregnant at the time) was positive for Down Syndrome. That was the first possible diagnosis that would make me a special mom. I had numerous Level 2 ultrasounds done without any conclusive details. We decided to put it in God’s hands rather than risking a miscarriage by having an amniocentesis. I remember the ultrasound doctor stating that she didn’t understand my reasoning, that she had terminated a pregnancy after learning her child might have special needs. I could not fathom doing that.  I just wanted to prepare myself and our families for having a special child whatever the diagnosis. That was the beginning of the roller coaster. 

In early December, we had Marina (named after Saint Marina…the saint for “handicapped” children) two and a half months before Fritz’s second birthday. She was born without Down Syndrome-- instead, a cleft in her soft palate. We thought all that we had gone through was God’s way of preparing us for her cleft. I remember all our trips to Children’s Memorial in Chicago to see her cleft palate team, seeing what some families were going through with their children. I am sure that some of those same families that I was admiring for their strength in situations that far outweighed my own, were probably looking at a family themselves and thinking the same thoughts. We do what we need to do as parents to give our children what they deserve in life whatever the diagnosis.

After Marina’s palate surgery when she was 7 months old, Rick and I decided to take Fritz to a developmental pediatrician to see what type of services we could ask for from the school district when he turned three years old. I still get chills when I think of that doctor’s name. I remember the crammed, stuffy room she “played” with him in. I remember the coldness I felt. I especially remember getting her “official written diagnosis” in the mail. She described a little boy we didn’t see at home. She used the words PDD. The letter was full of negatives, not one positive, not one offer of support. Our doctors and therapists, however, kept insisting that he was just severely language delayed, and that everything would be fine. So we calmed our hearts again, and plugged along.

Marina on the other hand has been our child with constant needs. After her cleft palate surgery, she wasn’t the same. The sparkle left her eyes. Around her 1st birthday, as she was learning to walk, she would get almost to the couch and lunge/fall forward like she didn’t know her place in space. We were concerned that there was something going on, so we decided to take her to see a neurologist. The doctor ordered genetic testing that she said was standard protocol.  They were looking for Fragile X and other possible chromosomal disorders. The test came back negative for all of those things (which the doctor had said would happen), but it showed a “XP Deletion of the XX Chromosome." Marina’s first official diagnosis. But with that knowledge, there were no answers. The geneticists couldn’t tell us how she would be impacted. There was a possibility that everything would be OK since women have two X Chromosomes to go off of. Rick and I went through genetic testing ourselves to see if we were carriers… nothing. We chose to not test Fritz since boys with this deletion are severely impaired (in hindsight, I wish we had…). We went on with our lives, the therapies, and hoped for the best.

In recent years, researchers have put forward a genetic explanation for the differences in numbers of boys having Autism versus girls. One study stated that the gene or genes for Autism are located on the X chromosome. Girls inherit X chromosomes from both parents, but boys only inherit one from their mothers. The hypothesis is that the X chromosome which girls inherit from their fathers contains an imprinted gene which 'protects' the carrier from Autism, making girls less likely to develop the condition than boys. Also, because women/girls have two X chromosomes, chances are if she has a defective mutation on one of those genes, she can compensate because she has one from the other parent. Men/boys are unable to do so.

Fritz received his official diagnosis of Asperger Syndrome when he was 6 years old. We decided to take him to a psychologist his Kindergarten year because the school district wanted to include him only for Encore classes (Music, Gym, and Art). Honestly, there was a little bit of relief when we heard Aspergers. We knew how important it was for him to be with his typical peers, and knew that Fritz wouldn’t have that opportunity unless he proved it to them. He started talking that year, and hasn’t looked back (he has been in Honors classes throughout the years, and we are now looking at colleges!!!)

Marina has had more diagnoses. Two years ago we started noticing that both Marina’s hands were turning outward at her wrists. She seemed to be constantly pushing her hands onto the edges of tables or asking for “hand squeezes.” What we thought was a sensory thing turned out to be Madelung’s Deformity. She went through surgery to see if cutting her tendons would allow her wrists to straighten before her growth plates closed, but she wasn’t that fortunate. While the pain doesn’t seem as intense, her hands are starting to turn out again. I’m so sad that she will continue to face issues with this, and that down the road she might lose mobility in her hands…

During this same time, the orthopedic surgeon who first x-rayed her for Madelung’s thought she had fractured her arm early in life and that it had never quite healed. (I felt like a WONDERFUL mother then… thinking she had broken her arm and I knew nothing about it!) However, when the hand specialist came in to speak to us, he informed us that she was born with a variation of a radial clubhand. She was born without a radial head in her left arm, so she is unable to twist/flip/rotate it unless it’s from her shoulder. What a huge surprise! We had seen her over the years compensating with her left arm, but thought it was a motor-planning issue. All of these things we feel are connected to her XP Deletion… there might be more issues that will arise in the future.

“Add it to the list”…. That is what Rick and I would always say when another doctor, therapist, teacher, etc told us what was “wrong” with our children, what we said after each new therapy or diet we would try for our kids. Hearing everything that is “wrong” with your child(ren) is overwhelming! Now that we know what is going on, and we can handle it. All of the other mini diagnoses (Apraxia, Sensory Integration Disorder, allergies, etc) make sense to us now. It’s like the Autism symbol- the puzzle piece- each diagnosis for our children was a puzzle piece, and through the years, we were slowly putting the pieces together to see the entire picture. Fritz’s pieces don’t fit in Marina’s puzzle and vice-versa. Each puzzle is unique. “Add it to the list” is also something we say now when they achieve something we didn’t think possible in their early years.
Miggy: Could you please educate us about your children's diagnosis and explain how your children’s needs affect your day-to-day life?

Nicole: The one thing that has been frustrating through the years for me, is that with Autism, there isn’t any medical test to confirm a diagnosis. You can’t look at my children and “see” Autism. You may see some traits (toe walking, echolalia, meltdowns, etc) but all in all, they look typical.

The best way I have been able to describe the Autism Spectrum to people is to say it's like an umbrella. PDD on the far left tip, Aspergers on the far right, and Autism in between. Everyone on the Spectrum stands underneath this umbrella, but the umbrella has holes in it. When various traits rain down, some people are rained on more than others. Why two people with the same diagnosis are completely different, well the rain has hit them in different ways.

Fritz and Marina are completely different, but share a lot of traits as well! Each of them have been affected by Autism through their environments (ex: too much stimulation can cause a meltdown), affected socially (ex: they have a hard time “reading” people or making friends), and they’ve been affected by constantly having to prove themselves to others (ex: having them included with their typical peers in school).

Autism through the years has meant countless hours of therapies, diets, meltdowns, advocating, being a constant caregiver, etc. While our world at one time was consumed with all of those things and more, today it looks a little calmer. Fritz gets support from the school district in regards to extra time on tests, preferential seating, etc. but no longer gets Speech or Occupational Therapy. He is getting ready for COLLEGE! Something we had only dreamt about in those early years!

Thursday, May 17, 2018

Going Back to Hawaii

This Little Miggy || Going Back to Hawaii
It was August of 1996 and I was 19 years old with a freshly broken heart and a savings account that had over $2,000 for the first time in my life, when I boarded a plane headed to Honolulu Hawaii.

Having spent my freshman year of college at a community college in Orem, Utah hanging out with my high school friends and their new dorm friends from down the road at BYU in Provo, (the University I had initially been denied acceptance to, but would eventually graduate from) something was missing from my college experience thus far. I lived on my own, I went to school and got good grades, I even fell in love and had my first serious boyfriend that year, but it was not the college experience I had imagined for myself.

Dependence was the under-painting of my freshman year. I had become too dependant on too many other people for too many things. Dependant on other people for friends, for rides, for adventures and even for happiness. I had set out to live on my own and find my own way, but I fell back on the people around me. I needed to do something big and daring, and I needed to do it on my own. So I moved to Hawaii.

I was actually going to attend BYU-Hawaii on the north shore of Oahu and when I stepped off the plane I had no idea what I was doing. What I mean by that, is I literally had no idea what to do after I got off the plane. See I had never bothered to look at a map of Hawaii and so I didn't know where Honolulu was in relation to Laie, the town where I was headed, and I wasn't sure how I was going to get there. With this idea of "adventure!" and "figure it out on your own!" as part of my mantra, I had decided not to prepare too much in advance because I wanted to problem solve for myself how to do things and know that, for example, I couldn't just call a friend to come pick me up from the airport. In hindsight not figuring out a ride from the airport was actually super stupid and I could have gotten myself into a bad situation. I remembering asking a stranger if I could take a cab to Laie and he looked at me like I had 6 eyes. I walked away. Luckily I found a group of students who were smarter than me and had signed up for the school's shuttle and I was able to hop on.

Besides actively choosing ignorance as a game plan, I also remember stepping off the plane and feeling immediately at home. Not home home. It wasn't exactly a feeling of familiarity and safety. It was foreign and new, but something about that island resonated with me and I knew I was exactly where I needed to be. I remember clearly the experience of witnessing my life changing before my very eyes and it was electric.

I will never forget looking out of the window on that bus ride up to the north shore and seeing road, beach, water and realizing I live here now.

That year in Hawaii was a pivotal year for me. I came to a place where I knew no one and no one knew me. The blankest slate of my life. I made friends, found housing, surfed, rock climbed, got scuba certified, hitchhiked, camped in the mountains, and I figured this all out on my own. I was not tied to my past or another person and I learned not only that I could do hard things, but I learned to define what hard even was. Moving to Hawaii was one of the best decisions I ever, ever made.
I came back to Provo, Utah in April of 1997. In 1998 I returned to Hawaii to work for the summer and I haven't been back since. Until...

Next week I'm returning to Oahu with my family for the first time in 20 years. TWENTY YEARS. I can barely comprehend that but I am so excited. I feel like I'm visiting an old friend. There are so many things I'm excited to see and show my family, but at the same time I know that in 20 years it has probably changed so much.

Here is what is currently on my to-do list:
Visit Laie and BYU-Hawaii, and the Hawaii Temple
Polynesian Cultural Center
Temple Beach
Suset Beach
Pipeline
Wiamea Bay
Hali'ewa and Motsumoto's shave ice
relax on the beach
possible scuba dive or shark dive excursion
Pearl Harbor (never did this the first time!)

Friends, what else do I need to see, eat, do while in Oahu? We will be in Waikiki for the first 2 days (my husband's dental conference) but the last week we'll be on the North Shore staying close to Turtle Bay. A lot of the hikes I did back in the 90's are no longer available, I'd love to take the family on a hike. Of course we want some down time too...we're going to be on Island time after all, but what else should I add to the list?

Has anyone else ever had that experience of packing your bags and changing your whole life in an instant? Where did you go and has the experience stayed with you? Did you find it to be a pivotal, life changing experience like I did, or was it just another place to live? As much as it freaks me out to think of one of my girls doing this in their late teens, early 20's, I so badly want them to have an experience like this--to do something drastic and daring with their life just once! Thoughts? 

Monday, May 14, 2018

Fostering Creative Expression Through Style

This Little Miggy || Kid Made Modern Apparel
This post is sponsored by Kid Made Modern. I am so thankful to work with wonderful sponsors here on This Little Miggy as it allows me to continue to make great content. Thank you for supporting sponsors here and as always, all opinions are my own. (I also want to mention that my kids decided individually if they wanted to participate in this post and they each got paid for their participation. This could and should be a whole separate post, but over the years I've come to believe that it's important not to force my kids to be a part of the blog if they don't want to, and if it's a post I'm receiving compensation for, they should be compensated for their time as well.) 

There are many things I miss about the toddler years, like the budding vocabulary of mispronounced words and tiny toddler arms wrapped around my neck giving me the best hugs on the planet. But one of my very favorite toddler tendencies were the cute and crazy outfits. I absolutely loved it when my little girls confidently paired a tutu with some crazy tights and a mismatched shirt. Another solid combination? A heavy winter item like a wool sweater or Ugg stlye boots mixed a summer staple like flowery shorts or a spaghetti strap sun dress. There are no rules for dressing when you're a toddler (or any rules about anything for that matter) and the confidence they exude in an outfit they feel proud of is admirable.

A couple weeks ago I shared 5 tips for creating an art closet, to help foster creativity in children by giving them access to art supplies so they can create at a moments notice. Today I'm talking about fostering creativity in children through style and fashion in partnership with Kid Made Modern's new apparel line. All the pieces are mix + match and unisex and come in high-energy, fun colors and patterns.

My girls each got to pick out a piece and then create some accessories with the Kid Made Modern crafting kits, style their outfit and of course do a high fashion photo shoot. While I provided some guidance, they styled their outfits themselves including their accessories and hair. Unfortunately Annie Leibovitz was unavailable for this particular shoot, so I had to step in last minute... luckily things went OK. And since Kid Made Modern creator Todd Oldham was heavily influenced by artist Charley Harper, I thought these Charley Harper murals were the perfect backdrop for this particular shoot.
This Little Miggy || Kid Made Modern Apparel

Why care about style?
Listen, I'm not a huge fashionista and I don't talk to my kids about fashion and style on a regular basis. It's not at the top of my "important attributes to teach my children" list. But I do believe there is power in good design and personal style. One of the reasons I want to help my kids develop their own personal style is that I believe it's important--or at least really helpful--in life for your outsides to match your insides. It's a principal I've always understood in some manner, but my friend Stasia was really great in helping me get it. She calls it inside outside congruency, which is to dress in a way so that your outside expresses who you are on the inside. Another way to think about it is look good, feel good, do good. Personally, I know that when I look and feel good--when I feel like my authentic self--it actually helps me do more good in the world around me, from my family to my kids to my community. Really. So while I'm not trying to turn my kids into little fashionista's, I do want them to be the best versions of themselves. Here are some things that have worked for us.

Friday, May 11, 2018

Special Needs Spotlight || Shannon


Miggy: Welcome Shannon! I'm excited to be featuring you today, thank you for participating. You stated in your first email to me that you are an adult with a spinal cord injury. Could you please tell us about the injury--how old were you when it happened and what was the immediate aftermath like--for example was there a long recovery period? How did you first feel when this happened to you? How do you feel now?

Shannon: In 1987 when I was 22 years old I sustained a spinal cord injury to the T11 (thoracic) level. I stayed in an acute care hospital for about a month where I had 2 surgeries to stabilize the spine and was then transferred to the Rusk Institute in New York City for rehabilitation. Recovery period in terms of pain from the surgery was about 1-1/2 months. I have what is called a complete injury and I did not have any recovery of movement or sensation below my injury level. Complete versus incomplete spinal cord injury does not mean the spinal cord is cut in two – that is pretty rare. A bruise or compression is enough to cause complete injury. Incomplete just means there is some degree of residual function/sensation, and how much recovery a person gets varies a lot. So in rehabilitation, I had to do exercises to become strong enough to do everything with the muscle function that I have--use a wheelchair and get in and out of bed/off and on the toilet, etc; get dressed without standing up. I also walked with a swing gait with full leg plastic braces and a walker; this was not using any leg muscles, but swinging from the hip, and was good exercise but not practical in life outside physical therapy sessions, so I did not do this after I left therapy. I stayed in the rehab hospital for 10 months – not because I needed to, but because I had no accessible place to live. They were about to send me to a nursing home but I found a somewhat accessible apartment that I shared with my aunt until I went to college (I had been in college at the time of my accident; I did not return to the same one).

I felt terrible at the time of my accident. I had heard/read about spinal cord injuries and knew that more is affected than walking. It also affects bowel and bladder control and I didn’t know exactly how that was handled. One thing that made me feel better was in the hospital they had a woman with SCI come to see me and she had a child after her injury, which was important to me. In rehab I was very focused on walking again and was not an easy patient. The year after I left rehab I mostly stayed home and that was even worse. Life improved after I had an operation to increase the size of my bladder and no longer had to use a Foley catheter with a urine bag attached to my leg, and I returned to school.

How I feel now--well there are quite a few people who think their SCI made them a better person and would not change it because they have had great experiences because of it. I don’t really feel that way, I do wish it had never happened and I don’t think it made me a different or better person. But I don’t have a choice, I have to live with it and make the best of things--there is still a lot to enjoy in life that has nothing to do with being able to walk. I was a very self conscious person when I was injured and it was very hard for me to feel people were staring and pitying. I still feel kind of self conscious; using a chair is like having a bright red sign on you. I don’t like it when people call attention to it, like yell “watch your back!” or tell everyone to move out of the way because “a wheelchair” is coming. I am good at getting through crowds in the chair, and I like to do it on my own without anyone trying to clear the way. I know how to operate my chair and how much space I need. People tend to not pay attention when they are walking--looking at their phone or walking backwards--or they leap needlessly out of the way when they see me coming and grab their kids. It is hard to be in a situation that most people think is a great tragedy where you can’t have a normal life. Some people even would rather be dead then be me. Really, there are much worse things.


Miggy: Can you please educate us about your disability, what your needs are and how it affects your day-to-day life?

Shannon: As I said, my level of injury is T11, that is paraplegia at a low level so it means I can use all the muscles in my stomach, chest and back. I would like to clear up a common misconception that all quadriplegics can’t move anything above the neck and all paraplegics can’t move anything below the waist. There are various levels of injury depending on what segment of the spinal cord is injured. Many people see a quadriplegic moving his arms and think there is some mistake, but no, at the highest level of complete quadriplegia there is no arm movement and a ventilator, at the lowest level the arms work but the fingers are always affected. With paraplegia, at a higher level there are varying degrees of paralysis of the trunk. Then there are the incomplete injuries that I mentioned, so that you may have a “walking quad.” Anyway, at my level (and really any level of paraplegia) help with dressing, showering, etc is not required. I use a bench in my bathtub to sit on while I shower. I get dressed in my chair, it’s not as hard as people imagine, takes about 5 minutes. Even health care professionals who do not work with SCI patients are often surprised that I don’t need help with these kinds of activities of daily living, but it’s nothing unusual, it is what is expected for my injury level. I use a manual wheelchair and I am lucky that I do not have shoulder problems (many people who use manual chairs for years do). Doing some kinds of housework is more difficult and time consuming, but mostly possible; however, I have always had some kind of help in the house from an aide to help with it. Cooking is not at all difficult.

Although I do not have normal sensation below the injury level, I have neuropathic pain, like a burning, tingling sensation that is very annoying and is hard to treat. I don’t take medications for it as they don’t help much and tend to make you sleepy. It’s like the feeling you get when your hand falls asleep but worse. I have been working full time since 1994, and am not on disability benefits (working while disabled is a big topic by itself, many disabled people want to work but face various difficulties in doing so, including loss of Medicaid if they need home care since other types of insurance don’t usually cover that; there are Medicaid programs for working disabled people in 43 states where you can keep Medicaid at income levels higher than usual Medicaid levels, but this varies by state). I had a baby in 1995 and I did not have a problem caring for my son from a wheelchair. It was not necessary to have a C-section (many people think this). It’s not that different taking care of a baby in a chair, especially if you can use your hands.

My needs mostly revolve around physical accessibility for my wheelchair. When I was injured the ADA was not yet in place, but I don’t have a lot of experience living without it since I didn’t go out that much for the 2 years after my injury. With the ADA the degree of accessibility is really quite good for most things--I can take public transportation, travel, shop, eat out without a lot of trouble. Of course there are historical buildings that have not or could not be made accessible, and businesses that have not come into compliance. Last month I went to a restaurant that had been recently renovated and had an accessible bathroom, but they left on a step to get into the building, which could have really easily been eliminated or replaced with a ramp. There are still corners where curb cuts have not been made and curb cuts that were poorly made/not in good repair. The most difficult access problem is finding a place to live, and visiting others. Most people don’t live in accessible places with accessible bathrooms and I rarely visit anyone. I live in a new, accessible apartment building, but it would not be affordable for a lot of people with disabilities who are not working. Affordable accessible housing is scarce and there are waiting lists for most of it (I am not on those lists; I don’t qualify due to my income).

Thursday, May 10, 2018

We Got a Dog!

This Little Miggy Stayed Home || We Got a Dog!
If you follow me on Instagram than this is no secret, but it might be new to some of you here... we got a dog! He's a boy named August (no alias this time, you get to know his real name!) and he is a standard poodle. Yes I know he looks like a doodle, but he is a standard poodle.

It's been a little over a month since we brought a new boy into our lives and I thought I'd tell you how we found him and how life has been the past month with our August boy.

Why we got a dog and how we found him
The kids. It all starts with the kids begging and begging for a pet. Of course. My husband had a cat growing up and I sorta had a cat, for 1 year when we lived on a ranch. He was pretty self sufficient guy named Captain Jack and could be outside for days on end, until one day he never came home. (We think he was killed by the gang of wild cats on the ranch. They were a brutal bunch.) But that was the extent of my husband's and mine combined pet experience.

We had been holding off on getting a family pet for years, but lately our children's pleas had become more intense. No pets until Zuzu was 3 I would say. And then Zuzu turned 4. My oldest also made the point that she's already 11 and she's never had a pet. Plus--this was the kicker--she has practiced her violin for (kid you not) over 500 days in a row without missing a single day and her cousin got a cat after practicing just 100 days in a row and couldn't she please finally get a pet? And while I totally blame my sister in law for setting the bar so high (thanks beyotch), my oldest daughter was right. It was time for a pet.

If we were going to get a dog, I knew I wanted a poodle or a doodle of some sort. Not only do they not shed, they're super smart, highly trainable dogs. We started looking at shelters, but with no luck. Also, as much as I love the idea of rescuing a shelter dog, as a first time dog owner with young children I wasn't set on it.  One night my husband Googled and found a few listings on Craigslist and another craigslist-like site. We found a listing for a standard poodle that a family was selling. He was almost a year old, potty trained and crate trained.

I called and spoke to the mother of the home and asked her everything. What was his temperament? How long did they have him? And most importantly why were they giving him up? We talked for almost an hour. They loved him--had him since he was a puppy--but with 3 kids 7 and under, and both her and her partner working full time they didn't feel like they were giving him the best home. Mainly, it was the working--the dog spent most of the day in the crate and they didn't want that life for him. With heavy hearts, they decided to sell him. They were also equally interested in us as a family--they wanted to meet us and make sure their dog was going to a good, forever home.

They live 2 hours away from us, but one night after school I made the drive with the girls to go see him. He was very, very excited and after that first visit I wasn't sure we were going to bring him home. In fact we had sorta assumed that if we were getting him I would bring him home that night. But once I got there, no way could I make that call on my own. The two little girls were pretty scared of his size and excitement (I don't blame them--he's big!) and they had told me he was a pretty calm guy for a puppy but that he got excited around new people, but would eventually calm down. He did calm down, but it made me realize that this would be a big step for us. I told my husband he needed to go meet the puppy for himself and weigh in.

The next weekend he went with the girls (I was out of town) and his immediate reaction was similar to mine. Wow. Lots of energy. But yes, he calmed down after a bit. He called me a couple times on that visit and at some point we decided to go for it. He brought our new dog home.

The great news was that he was already potty trained, crate trained, was up to date on all his shots, and came with his crate, dog food, toys, and treats. Not that we were looking for a deal, but we got a great deal.

It's been about a month now and some things have been great, others a little more difficult and somethings are just different.
This Little Miggy Stayed Home || We Got a Dog!
The Good
He is a really sweet dog. He's pretty excited when he meets new people, but is usually pretty calm, which is great considering he's still a puppy and a rather big dog. He is very soft and cuddly and loves to be loved. The first couple of days we just spent cuddling our new guy and getting to know him. A lot of people talked about how great it is to have someone in your life who shows unconditional love, especially when your kids hit the teen years and I can already see what they mean.

Friday, May 04, 2018

Special Needs Spolight || Aurelia

Hi, I’m Megan. I’m a stay-at-home mama to 3 girls, the youngest of whom has Smith-Magenis syndrome, a rare genetic disorder. I’m also a knitter--it keeps me sane and is portable. My husband, Keith, is a forensic architect. We live in Virginia but long for the West Coast. I write about us (sporadically) here at Moogielight or you can find me @moogielight on Instagram.

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Miggy: Hi Megan and welcome! So happy to have you here today. First, can you take me back to the day you knew your daughter would have special needs? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Megan: We didn’t know during my pregnancy that there were any problems. When Aurelia was born, however, she immediately had a tough time breathing and quickly developed multiple other mysterious symptoms. She was in and out of the hospital for weeks after birth, and endured test after test, but no one knew what was going on. As she got older she continued to struggle with rapid breathing, chronic constipation, choking while breastfeeding (she couldn’t take a bottle at all), missed developmental milestones, vision problems. Doctors, specialists, even 2 geneticists, told us she’d grow out of it, but I knew something was different about our sweet girl. At 9 months, a new pediatrician took one look at Aurelia and ordered an evaluation with Early Intervention and referred us to a neurologist who in turn referred us to a (3rd) geneticist, who ordered multiple tests. At 14 months, we got our answer: Smith-Magenis syndrome (SMS).

Getting the news was surreal. We were lucky in that the geneticist had actually heard of the disorder and could refer us to an expert--that is a rare experience for parents--but even so she had little information to give us other than a printout from a website. It wasn’t until we got to the car and started googling that we really started learning about our daughter’s diagnosis. At that point we were filled with shock, fear and grief. It took weeks of processing and learning how to place boundaries on what we allowed ourselves to read about SMS before we could start to come to terms with it the fact our daughter had this life-altering disorder. We were scared, but knew we’d fight for our girl every chance we got. I focused on stories of small children with the disorder and told myself we’d take it step-by-step; the future could be dealt with later. That said, the reality of what Aurelia’s diagnosis meant took a while to set in. The first time another SMS mama said the word “disability” when describing our daughter's needs, it hit me like a ton of bricks. I’d never thought of her diagnosis that way, or maybe never let myself think of it that way. It made total sense, but understanding that I had a child with a disability somehow took her diagnosis to another level for me.

Aurelia is 4, almost 5, now. In the past few years, we have made connections with an online worldwide community of families with children with SMS and even met a couple of families in our area. We’ve had amazing parents of older kiddos with SMS take us under their wing, become wonderful friends and valuable resources, something I hope to do for others someday. We’ve attended a PRISMS (www.prisms.org) conference to meet other families and persons with SMS and learn about the latest scientific findings. We are armed with more knowledge and support, which makes a huge difference. SMS is hard and scary at times, but I wear the label “special needs mama” with pride. We still have a lot to learn, but are making strides alongside our daughter, who surprises us every day with what she learns and accomplishes. She is teaching us to always presume competence and see the girl instead of the disorder.


Miggy: Could you please educate us about Smith-Magenis syndrome, how it affects Aurelia and how her needs affect your day-to-day life? 

Megan: Smith-Magenis syndrome (SMS) is a rare genetic disorder caused by either a deletion or mutation on the short arm of the 17th chromosome at 17p11.2. It is believed to occur in as many as 1 in 25,000 individuals, but at last count there were fewer than 800 diagnosed persons worldwide. The chromosomal abnormality associated with SMS is commonly a random, non-familial occurrence, though can be inherited in some cases. Persons with SMS are typically happy and affectionate, with excellent memories, strong wills, and a proclivity for technology. Most also struggle with global developmental delays, health problems, low muscle tone (hypotonia), cognitive delays, lack of safety awareness, an inability to localize or feel pain, and intense sensory processing and behavioral challenges which cause meltdowns with self-injurious and aggressive behaviors. One of the most challenging symptoms is the inverted sleep cycle: persons with SMS produce their bodies’ natural melatonin in the mornings instead of at night like most individuals, and many stop producing any melatonin at all by adulthood. This results in continuous sleep deprivation, which exacerbates behaviors and health issues. Aurelia frequently is awake from 1am to 5am, having only slept a few hours prior to waking and sleeping only an hour or so afterward. Naps can be equally sporadic.

Aurelia is, in many ways, a “typical” kid. She’s smart, silly, and affectionate and she loves to learn and participate in family and school activities. She loves being outside, and is happiest playing in the waves and sand at the beach; she loves to paint and play with bubbles. She is, however, significantly impacted by SMS and is followed by roughly 20 medical specialists and PT, OT, ST and ABA therapists. Because she is very easily overwhelmed and triggered into intense behaviors, we have put plans and supports in place to help her and us get through each day. We schedule events and appointments at times she tends to be calmest. Keith and I tag-team on particularly strenuous appointments or at sibling events, making sure one person can attend to her needs while the other person speaks with the doctor or watches a performance. Because she doesn’t sleep much, either her dad or myself have to be up with her at night, meaning we are also continually sleep-deprived. When awake, Aurelia needs constant monitoring to keep her safe and calm, to keep her from running off unattended or doing something dangerous. Having someone continually by her side is also necessary to make sure a frustrating moment doesn’t become a full-blown meltdown and if it does, to move her somewhere safe so she doesn’t hurt herself. Persons with SMS often don’t have the ability to calm themselves or self-soothe; instead, behaviors and emotions escalate until someone steps in to help. Ignoring a tantrum is not an option. I don’t work outside the home, so I can be available to take her to her many appointments and be on-call when she is at school in case of a bad day. At school, she has a 1:1 aide that is always with her.

As tough as managing her disability is, seeing her little face light up when she’s having fun, or watching her hug her sisters or begin to run or jump, or hearing her say (or watching her sign) a new phrase for the first time, or feeling her arms around my neck is so powerful that all that tough stuff is very worth it. Yes, I would rid her of SMS if I could, because parts of it are so, so hard on her and us. But I would never go back and choose a life without her to rid us of SMS. Aurelia is not SMS. Aurelia lights up our world.

Thursday, May 03, 2018

Gathering in Zion

"The daughters of Zion are haughty...." Isaiah 3:16
"The daughter's of Zion are hotties..." possible modern day translation? You decide. 

One of the gifts of having lived all over these great United States are the amazing friendships I have dotting this blessed land. I have so many good people in my life. And if you have good people, no matter how far away, you should make an effort to gather. From the time I was young I learned to hold onto dear friendships for dear life. Keeping in touch--unapologeticly and shamelessly--is one of my gifts. I text, I call, I email, I FaceBook, I Marco Polo, I carrier pigeon, I cat call, I yodel, I smoke signal, I morse code... you get the idea. Whatever it takes, I keep in touch. But there is nothing like coming together, being in each other's presence, breaking bread, and having a shared experience. Keeping in touch is good, but there is magic in gathering.

Last weekend I rendezvoused with 2 of my best girls--Fran and Missy--in the middle of the desert at Zion National Park in southern Utah for adventure, friendship, exercise, relaxation, death defying feats, deep conversation, laughs, and of course ice cream. There are some people in your life that when they say, "Let's get together," you immediately say, "When and where?" These girls are those people. They are my people. The call was sent out and we gathered. The sisters gathered in Zion.
Also, I'd like to share a fantastic strategy for traveling to new places, which is especially useful when you're not the one planning the trip. It's a tactic I have done time and time again and it proves to be an excellent strategy. I call it the Zero Research Method. Do zero research about where you are going--no googling, reading or talking to people who have been there--and you will be delightfully awestruck and amazed when you get there. I did this when I moved to Hawaii at age 19. I did this when visiting Rome 5 years ago. And again I employed this strategy last weekend when visiting Zion National Park and let me tell you, zero research beforehand ----> zero expectations ---> MIND BLOWING REALIZATION THAT YOU ARE IN ONE OF THE MOST BEAUTIFUL PLACES ON THE PLANET AND WHY DIDN'T ANYONE EVER TELL YOU ABOUT THIS PLACE OH YEAH THEY DID BUT YOU DIDN'T REALLY ABSORB THIS INFORMATION UNTIL JUST NOW. That has been my experience with the "zero research" method of travel. You're welcome.

Anywho, there are two main reasons one comes to Zion National Park: to hike The Narrows and to hike Angel's landing. Again, I had heard of both of these hikes, but didn't really have any idea what they entailed. (However, in the days leading up to the hike my friends and my husband started talking up the dangers of Angel's landing, so I did know there was some risk going in.)

The first hike we did is The Narrows. If you come to Zion National Park and can only do one thing, I would recommend The Narrows. You are essentially walking through water with red rock cliffs on either side, with twists and turns and beautiful scenery for miles and miles. You can go as near or far as you want to go. Now I have done a similar hike in Oregon called Oneata Falls and it was amazing. Beautiful, lush, cliffs on either side, walking through water, at one point chest deep even. But the entirety of Oneonta Falls is 1/2 a mile. The Narrows, by contrast, is long. Miles and miles long. We still don't know exactly how many miles we went, but we started our hike at 9:15 in the morning, and we finished around 2:30 in the afternoon--that's over 5 hours of hiking through these beautiful canyon walls. It was rather chilly in the morning, but the light was perfect. There were rays of sun streaming through cracks in the steep red walls, creating a beautiful, gentle light. We were much warmer as the sun creeped overhead around noon, but honestly I preferred the chilly, perfect light. The water that was often mid-calf, but also up to our waist at times. Had we gone up even further we would have been chest deep. As I said, the water was cold but we rented booties and boots, along with walking sticks--all of which I highly recommend--and our feet held up well.



Of course we talked quite a bit and topics ranged from politics, to religion to our kids and who knows what else what. But the true measure of a good friendship is how much we can also be silent with each other and feel just as comfortable. Yes we had lots to say, but at times we just want to let the water, the light, and the rocks do the talking. We could talk or not talk all day. (Name that movie.)