Friday, October 20, 2017

Special Needs Spotlight || Vin + Sara

Hi! My name is Sara, and my boyfriend’s name is Vin. We are average twenty-three year olds: we go to school (I’m in the middle of getting my Master’s in early childhood special education and Vin is getting his bachelor’s in aviation administration), we like to hang out with our friends, we go out for drinks, and we like going to concerts. It just so happens that we were both born with disabilities. I have cerebral palsy, and Vin has something called arthrogryposis multiplex congenita, which is a rare muscle and joint disorder that occurs in 1 in every 3,000 births, so he uses a wheelchair to get around. In the time we have been together, we have never let our disabilities stop us from doing whatever it is we want to do, we just figure things out as we go along.

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Miggy: Welcome Vin and Sara! I'm very excited to be interviewing you both today as you are the first disabled couple I've ever interviewed. Let's start at the beginning--When did your families first learn about your disabilities--was it during an ultrasound, shortly after birth or sometime after that? Have they ever talked to you about what those early days were like and how they felt? At what age did you start having an understanding that you were different from other kids and how did you feel about that growing up?


Sara: I was diagnosed with cerebral palsy when I was around a year and a half old. As I said in the intro, I was born three months premature, so I was always considered “high-risk”. It wasn’t until my parents noticed that I wasn’t hitting developmental milestones (lifting my head up, crawling, etc.) and I was evaluated by a neurologist that they knew the real impact my prematurity had had on me - they found out that it had probably been caused by bleeding in the brain. The biggest worry that my parents had after I was diagnosed was probably what my life was going to be like, if I was going to be able to walk and talk and be able to have a “normal” childhood. Everything in the beginning was a lot of “wait and see.” Once I started elementary school, that was when I really started to notice that I was different from the other kids in my class - I was the only one that wore braces on my legs, I was always missing school for doctor’s appointments and things like that - and it was actually really hard for me. I was obsessed with the idea of being “normal” and kind of tried to act like I didn’t have a disability even though it was pretty obvious that I did.

Vin: My parents knew about my disability as soon as I was born, because my mom had had amniotic band syndrome when she was pregnant with me, which is when the amniotic sac is punctured, creating bands of fluid which my hands and legs in particular got tangled in. Because of the amniotic bands, I’m missing my right leg and my ring finger on my right hand. They originally thought I had something called trisomy 16, which is a fatal chromosomal disorder, and they thought I only had a few days to live. I didn’t actually have trisomy 16, and it took doctors about six months to diagnose me with arthrogryposis, which they found out was caused by the amniotic bands. The entire time I was in the hospital, my mom didn’t leave my side. When my dad called all of my family members to tell them I was born, all he said was, “The baby was born, it’s a boy, he has one leg.” It took me a really long time to realize that I wasn’t like everyone else my age, it probably wasn’t until third grade that I was like, “Hey, I’m different.”


Miggy: Can you talk a little about what your childhood and family life was like growing up? How did your family treat your differences and did you have a lot of support from your parents and siblings? Is there anything you wish they would have done differently?

Sara: When I was younger, a lot of my days were spent being carted back and forth to various doctor’s appointments, therapies, and I did spend a fair amount of time in the hospital having surgeries. That was really hard, moreso on my family than me for the first few years of my life because I didn’t really understand what was going on, but somehow we made it through everything. My entire family, grandparents, aunts, uncles, cousins, have been just as big a part of my story as my parents and siblings have been, and it’s been like that since day one. Anything my sister or I have needed, someone has always been there to help out. I hear these stories about families who basically shun their relative with a disability, along with that whole part of the family, and it’s just heartbreaking. I couldn’t imagine my family ever being like that. I’m one of three kids, I have an identical twin sister who also has cerebral palsy and a younger brother who is typically developing. Growing up I was always treated like a regular kid, I never got any special treatment or anything like that because of my disability. My parents always allowed and encouraged both my sister and I to try things and do things, and they gave us all the support in the world. Sometimes it was hard for me, because I couldn’t keep up with the other kids and I knew that, but at least I had tried and given it my best shot. I am beyond grateful for them for that, because then I wouldn’t have been able to do many of the things I’ve been able to do, like be in a school play, be on my school’s lacrosse team, and go skiing.

Vin: My childhood was very different from a lot of kids. I spent almost every summer in the hospital having a different surgery, and I’ve had 16 surgeries in total since I was born. I have an older sister who is able-bodied, and she’s the princess of the family. She’s always tried to take my parents’ and the other adults in my family’s attention away from me and onto her. If something happened to me, for example if I sat up on my own, my sister would try to make everything about her. My parents have always been extremely supportive and helpful, and my sister was always the one who gave me tough love. She didn’t let me get away with as much as they did and didn’t just do everything for me. She forced me to be independent and I think this is why I can do so much on my own today. It was annoying when it was happening, but now that I’m older I’m really grateful for it.


Wednesday, October 18, 2017

Me, Too

Of course, me, too. Because I haven't yet seen or heard a "Nope! Not me! *thumbs up* We're all good here!"

There was the guy in high school who would lift up my cheer leading skirt and say, "You've got a bad case of 'virginitis,' want me to fix it for you?"

There was the time I sat by an older, slightly tipsy man on a plane who out of no where walked his fingers up my arm and then touched my lips and sorta laughed. I think he was trying to be flirty? I was 18 and I just turned my head toward the window and tried ignore him for the duration of the flight.

There was the guy I worked with at a restaurant who would I worked side by side with for hours in the bar area (read: again, I couldn't escape) and who would regularly ask me to "beat him with my lips."

There are others too, but this is the one that stands out most: I was in my mid 20's working for a small start up tech company in the safe enclave of Provo, Utah often referred to as Happy Valley. I worked with a lot of dudes--great dudes might I add. Many of these guys were my friends. I was one of 2 women on my team, who also happened to be a close personal friend. When she left, I was the only woman on my team.

I experienced run-of-the-mill sexism in the form of being left out of meetings I should have been a part of, or making suggestions that were dismissed only to have a male colleague make the very same suggestion a week later and the response was "Wow, that's brilliant! Why didn't we think of this before?" I once even called my boss out on it by blatantly asking, "Is this happening because I'm a girl?" It was actually naive on my part, because I was REALLY ASKING. (Luckily, when he said no, I wasn't so naive as to actually believe him. Not because I thought he was lying to me, but because I don't believe he saw it that way.) 

But there was this guy that worked for the company--an older gentleman shall we say--and at some point he started making me uncomfortable. He seemed to try a little too hard to be my friend, to be in my same peer group even though were were probably more than 20 years apart in age. He was a reluctantly aging Bro, if you know what I mean. My female colleague/friend also picked up on it and we started joking about his odd fixation on me. At this point it was weird, but more funny than weird and we could laugh it off. It started to feel less funny over time, and at some point the scale tipped a little more in favor of weird, than funny. 

Monday, October 16, 2017

L A T E L Y + a Fall playlist

It has not felt very Fall-ish around here, until today. But regardless of what it feels like the leaves have been changing anyway, Halloween is a couple weeks away (OK kids, time to nail down your costumes!) and aside from finally seeing  demo start on our new place (!!) we've been doing some fun stuff here and there, in general trying to enjoy this thing called LIFE. Here is what we've been up to lately:

This Little Miggy || Fall 2017
This is a little bittersweet for me... when my oldest was three I had the idea of doing a collaborative painting with her. She would draw the coolest line drawings and I always thought her drawings would make the best foundation for an oil painting. Well I never did it. I thought about doing it with my second as well, but didn't. (Bitter!) But I finally decided to make it happen with my third and I am loving it. Above is her drawing with charcoal on a piece of gesso'ed paper and I've been working doing an oil painting on top of it (but making sure her drawing still comes through.) Honestly, there is something about the drawing and line making of 3 year olds... if you have a 3 year old give them some big pieces of nice paper to capture their work and hang it. Even if you don't paint over it, it is some of the best artwork you will ever have. I have artwork from all of my kids when they were three hanging in my house, like this painting by PSP.

This Little Miggy || Fall 2017
This Little Miggy || Fall 2017
We also took advantage of the rain one day and went on a rain walk. I sometimes forget that something so simple, but so novel to the mind of a three year old can be the best thing that ever happened to them! She honestly loved it and talked about our rain walk for days.

Friday, October 13, 2017

Special Needs Spotlight || Will and Harri

Hi guys! If you love This Little Miggy and the work I do here, including the Special Needs Spotlight series, it would mean a lot to me if you would take a minute and like my FB page and Follow me on Instagram. And of course sharing these posts is always appreciated and one of the best ways you can support me. And for all my special needs families out there please be sure to check out my amazing giveaway with Alaska Airlines and enter before December 1st. You don't want to miss out--Details here! Thank you! 

Hi! I'm Alison and I live in London, UK with my husband Shaun and our three children, William who is 7, Harriet who is 5 and Sadie who is 2. Will and Harri have Pendred's Sydrome and are both profoundly deaf and wear cochlear implants. Will wore hearing aids until he was 4 and half when he ran into a tennis net and fell backwards onto his head. He had concussion and recovered well but literally went deaf overnight. He went to bed hearing and woke up saying his hearing aid didn't work anymore. This was 3 days after my husband had received a cancer diagnosis so pretty rough timing. Will had developed well with his aid and was a predominantly oral child so it was very, very hard for him to be without sound while he waited on surgery for cochlear implants and then them being switched on and then mapped (a total of about 3 months). Since having the implants however, he has done brilliantly. He only wore a hearing aid on his right ear but is implanted in both ears which makes a massive difference to how much sound and therefore speech he is able to access.

Harriet was born profoundly deaf and was put forward for implants straight away but the process takes a long time--she was 22 months when she had her first surgery. During this surgery she lost her vestibular system (balance). She went into hospital a physically normal toddler and came out unable to hold her head up, crawl, sit, stand or walk. She will never get her balance back but has learnt to compensate using her eyesight and touch and is thriving as an active 5 year old. Unfortunately her cochlear implant road hasn't been smooth. A year after implantation one of them spontaneously failed (1 in 100 do) at the same time as Will fell and my husband was sick (and Sadie was just 8 weeks old) and had to be replaced. Then a year after that she got a really bad infection and had to have her implant removed and was reimplanted 8 months later. Then this year in April she had another infection. Thankfully everyone acted quickly this time and it was stopped with a course of IV antibiotics but she still spent a week in hospital and a few weeks without her implant (meaning it needed to be remapped and turned down because the hearing nerve gets very sensitive very quickly). Because of this her hearing hasn't really ever been consistent but she's not let any of it stand in her way. She is a feisty little character and I wouldn't have her any other way!

Both the kids use spoken English and British Sign Language to communicate. They go to the most gorgeous school for the deaf where they learn to be proud of who they are as well as to achieve academically. It has been an uphill struggle to this point but both kids are a credit to themselves and to implanted deaf kids everywhere.

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Miggy: Welcome Alison! Thank you so much for being here on This Little Miggy today sharing your story and your beautiful family with us. First, can you take me back to the day you knew your kids would be deaf? 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?


Alison: We didn't officially know Will was deaf until he was about 6 months old. When he was first born he failed three newborn hearing screenings and so was referred to a hospital for further testing. For the tests the baby has to be in a deep sleep and so it was difficult to get an accurate reading. For months the doctors just said "we can't get a positive result" and I wish one of them had said to me "this means that he might be deaf" rather than allowing me to continue assuming it was just a matter of time until we knew he wasn't. When they eventually said it I was floored. Because he had had so many tests that lead to nothing I was on my own with him. I remember so vividly standing at the bus stop outside the hospital texting my parents and my best friend that my heart was broken. It was the first time that it really genuinely had been.


Because we have no family history of deafness Will had to undergo a lot of other tests to find out why it was he was deaf. I left with appointments for an MRI, an ECG, blood tests, a kidney scan and genetic testing. As well as appointments with a Teacher of the Deaf, a Speech and Language Therapist and a British Sign Language teacher. All of this made me feel like my baby was sick or in danger which of course he wasn't. But I knew nothing of deafness and so was distraught. Now I know so many deaf people and I know that they are no different to you or I. All of my worries that he wouldn't make friends or have a relationship or children or a job or a future at all were so totally unfounded. Now I see him and his deaf friends and hearing friends and how happy he is and how lucky we are to have the privilege of being his parents.

Harriet failed her newborn hearing screening hours after the most fantastic birth. I clearly recall how my heart felt like it had been crushed. There is a 25% chance that any of our children will be deaf and for it to have happened twice was very painful. Will was only 22 months so I didn't know that he would develop such brilliant speech and BSL skills. I just knew I now had 2 children that I had let down and had no idea how to raise. I was outwardly stronger with Harri's diagnosis and I fought for what I now knew she needed, so people would say "it must be easier the second time round." No. No it is not. In fact it is much, much harder. Harri has gone on to have quite a tricky journey with hearing so I do still feel some of the pain and doubt I felt at that first diagnosis. But she is happy and vibrant and proud to be deaf.


Miggy: Could you please educate us about your children's diagnosis and explain how your children’s needs affect your day-to-day life? Also, can you educate us about your children's cochlear implants Was it a difficult choice, what are the pro's and con's of getting cochlear implants?

Alison: My kids both have a genetic defect called Pendred's Sydrome that my husband and I (and our third child) are both carriers of. Pendred's Syndrome is degenerative which means that the kids were always going to be profoundly deaf at some point and we were going to have to choose whether or not to give them cochlear implants. They had them at different ages and have had very different experiences with them. Daily the main thing is that when they are wearing them they are definitely working. They each take 2 batteries that only last a day so we are going through 8 tiny batteries every 24 hours. They also have wires that can break and they are susceptible to moisture damage so in the summer can get faulty from sweat. Harriet isn't as tuned into her hearing as Will and so doesn't always realize when one of her implants isn't working so I need to regularly check for her.

They go to a school for the deaf which is relatively far from my house and so they go on a school bus (this is unusual in the UK, most children walk to school). Because of this their day is longer than the average school day and so they are very tired. The school is bilingual in that everything is spoken and signed for the children which is fantastic but again tiring. Both kids hear very well with their implants on if you are facing them and the room is quiet. However this can be difficult to achieve in a family home with three children all vying for attention. If they run ahead in the street you can't call them back and they can't wear their implants in water so bath times can be challenging!

Cochlear implants are an actual miracle. They are the most amazing piece of technology that I am forever grateful for. But they do not restore natural hearing. They give access to sound which means that my kids can use that access to develop speech and fit in better with society. The implant itself is the bit that goes inside the head. The surgeon drills through the skull and inserts a tiny wire with 12 electrodes into the cochlear. It is these electrodes that stimulate the hearing nerve and that allows my kids to hear. At the other end of the wire is a magnetic plate that they sit flush with the skull. You can't see it from the outside (especially if the child/person has hair) but you can feel it. Then there is an external processor that is the computer that hears the sound and stimulates the electrodes. There are various models but my kids sit on their ears similar to a hearing aid and then there is a coil that adheres to the magnet in their skull. How well they can hear massively depends on the person. There is a lot of evidence to implant early for maximum benefit but this depends on the severity of the deafness. 

Wednesday, October 11, 2017

We're Moving (+ why it feels like a big deal)

This Little Miggy || Moving

FINALLY. This has been in the works for over 6 months and I am happy to finally be able to talk about it here! (cue fanfare)

We're moving! 

Into a total dump.

(trumpets are silenced and confetti abruptly brushed away) Yes it's a dump and we have still got a long ways to go before we actually move. Just to clarify we are staying in Ohio, but moving to a new neighborhood, a new school district and for us this will also be a new church congregation (otherwise known as a "ward" in the Mormon world.) So let me tell you a little about why we started looking for a new house, how we found our new house, why it's been such a long process and why it feels like a big deal to us. We've found our homes in some creative ways over the years--including knocking on the door asking if they'd rent their house to us for 3 years (they did!) and buying a house from another state sight unseen (our current place!) It makes sense that we'd go the unconventional route again... it's in our blood! This is definitely going to be a lengthy post. Get a cuppa and settle in.

Why Move?
A lot of people have been surprised by our decision to move as we love our house, especially our big, beautiful yard. We have almost a full acre at the end of a quiet cul-de-sac with a plethora of large, mature trees. Additionally the yard is nice and flat (read: completely accessible) and even though we're not fenced in we have never worried about our kids wandering freely outside since again, we live in a quiet, tucked away cul-de-sac. Our current house is a flat, ranch style home (again accessible!) with a large unfinished basement that has been amazing for storage, a workout space, and a play area for the girls. Even as I type this I have a little pang in my heart--I love this house a lot. I always felt so lucky that we were able to find such a great home that was both accessible and fit our family's other needs in nearly every way. While it wasn't ever exactly our dream home, I often envisioned making it our dream home. Our bathroom remodel was a great start and I had more ideas and plans in the works. I know! Our (not cheap) bathroom! We've barely had it a year and yet here we are.

When we first decided to move back to Ohio, we had our sights on a particular neighborhood. In fact, the first house we tried to buy was actually in that neighborhood. But we didn't get that house and of course ended up in a lovely house, but in a different neighborhood. Over time we thought about staying put, but for a lot of reasons we have never quite felt settled here. The fact that we were constantly looking at real estate listings became a pretty big indicator to us that this wasn't where we wanted to be long term. As we continued to look around at other areas, the neighborhood we first tried to move into kept calling to us. Great schools, a tight knit community, lots of young families, walkability... it was really everything we were looking for. BUT I loved our house so much that I always told my husband that it was going to take the perfect house to get me out of here. (Or a total wreck. Either one.)

We weren't in a big hurry until sometime last spring I suddenly realized that my oldest was getting close to aging out of elementary school and if we wanted to plant our roots in one place before middle school, it was time to get serious. We called our real estate agent.

Friday, October 06, 2017

Special Needs Spotlight || Colton

Hi guys! If you love This Little Miggy and the work I do here, including the Special Needs Spotlight series, it would mean a lot to me if you would take a minute and like my FB page and Follow me on Instagram. And of course sharing these posts is always appreciated and one of the best ways you can support me. And for all my special needs families out there please be sure to check out my amazing giveaway with Alaska Airlines and enter before December 1st. You don't want to miss out--Details here! Thank you! 


Hey there! My name is Jackie and my husband, Patrick, and I were born and raised in Texas and are high school sweethearts. We both turned 30 years old this year and are secretly grieving the loss of our twenties, but also loving the slow growth into maturity and confidence that our new age brings. I grew up with a younger brother, diagnosed with Autism. Patrick and I welcomed our first born son, Colton, in January 2013! At the age of 2 years old, he was diagnosed with DYRK1A Syndrome after extensive genetic testing. Our daughter joined our family in early 2017. We have two fluffy golden retrievers who are great with our kiddos. 


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Miggy: Hi Jackie and welcome. Thank you so much for sharing your experience both as a special needs sibling growing up and now as a special needs mom. Since you were raised with a special needs brother I'm curious to know what childhood was like for you growing up? How did your parents deal with having a son with special needs as well as managing a child who was typical? Is there something they did really well? Anything you wish they would have done differently?


Jackie: I am two years older than my brother, Connor, and overall my recollections of childhood are very positive. Only a few negative memories stand out, like that one screaming phase he went through and occasionally feeling like he got more attention than I did. Otherwise, I liked being his helper. I was an outgoing and talkative child, so apparently I did a lot of the talking FOR my younger brother. I remember my mom and dad telling me that I was not his 3rd parent, so to leave that job to the actual parents in our family. Although he did receive an Autism diagnosis at the age of 4, I never knew that until much later in life when we started talking more frankly about the realities of his future. As a kid, my parents just explained on an as-needed basis that, “he needs more help” or “he learns differently than you” and that was that. As a teenager, I started to really grasp that his future would look different than mine and started wondering what my role would be as his sister as we grew into adulthood.

I think the reality for a parent of a special needs child 25 years ago was drastically different than today. From my perspective, my parents had a second child with an unfamiliar diagnosis, and with little information and little support, they did the best they could. In their shoes, I would have done the same. Overall, I think growing up alongside Connor has allowed me to have a greater compassion for people of all abilities. Although I certainly never predicted I would also be a mother to a special needs individual, being a sibling first has equipped me in so many ways. Many wise people have told me that God has been preparing me to be Colton’s mom for my entire life. Today my brother is 27 years old and continues to live at home with my parents. He has found a community and a purpose at a work program for adults with disabilities called Brookwood in Georgetown, TX. This amazing program allows him to make friends and contribute to the community. Two of his favorite jobs are working the register in the gift shop and slinging clay on the pottery wheel!


Miggy: Fast forward several years and you have your first child. Can you take me back to the day you knew your son 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?

Jackie: By Colton’s 9-Month well check appointment, he was not crawling or sitting independently, which was behind the average. When he was 10 months old, he had his first tonic-clonic seizure (at daycare, that was a very scary day). Around the age of 1, Colton wasn’t talking yet and then had his first ‘cluster’ of seizures. He had 4 tonic-clonic seizures in less than 48 hours, completely out of the blue. I think it was around that time that we really started to question if something bigger was going on, connecting the seizures and the developmental delays. Initially, we felt scared and worried about Colton’s overall health. Watching your child have a seizure is a horrible and helpless feeling. And the comparisons to your friends’ seemingly perfect babies can be a real mind game. Colton received an official diagnosis at the age of 2 and it provided the answers and explanations we had been looking for. Nowadays Colton’s seizures are well controlled with two different daily medications. We continue the grieving cycle on a daily basis, but more days than not are filled with acceptance and love for exactly who Colton is.

Monday, October 02, 2017

Dreaming (+ a very special giveaway!)

Thanks to Alaska Airlines for partnering with me this year on a discussion about fear, love and traveling as a special needs family. Thank you so much for supporting sponsors here on TLM, as it allows me to keep creating content I care about. As always, all opinions are my own. I'm excited to kick off Disability Awareness Month with this post and a very special giveaway for my special needs families out there! 

"Some men see things as they are and say why; I dream things that never were and say why not?"
--George Bernard Shaw

When I write about disability, I'm not always writing about disability.

Disability is one of the many lenses through which I see life. A lens through which I examine, explore and learn more about the human condition. Just like a Picasso isn't about paint on a canvas and a symphony by Mozart isn't about the instruments being played. They're lenses. We're all exploring different pieces of the human experience in whatever way we feel called to explore--words, sounds, pictures, paint, clay, film, earth, water, sports, travel... the list is endless.

But so often the messages are the same. So many lenses teach us about the beauty of the world around us, the beauty of humanity itself. The importance of unity, diversity, hopes, dreams, fears and love.

I've often said that the journey of a special needs parent is one that starts in fear and lands in love. For me, that fear at the beginning of our special needs journey encapsulated a host of unknowns, from medical conditions to medical costs, new family relationships and the harmony of relationships already firmly in place. For a while it seemed that the dreams for our family's collective future seemed to hang in the balance.
But then we landed in love. What I mean by that is that the love we felt for our daughter changed our perspective and our lives. Some of my fears actually disappeared altogether because it turned out that they were completely unfounded to begin with. Fear tends to conjure imaginary foes. Others fears diminished, because in the shadow of love those fears and worries became manageable.

See, fear is a shrinking experience. Fear makes you feel small and inadequate and ill-equipped. But love? Love expands. With love our view of disability expanded to see human POSSibility. With love we were able to see a life that is whole, futures filled to the brim with all sorts of good things to come and we breathed new life back into those dreams once rendered lifeless.