Friday, November 17, 2017

Special Needs Spotlight || Wesley James

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!

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My name is Rufus Wofford. I am married to Melissa and we have three little scamps that keep us busy: Wyatt (6 years old, typically developing), Wesley James (4 years old, born with Down syndrome) and Vivian Grace (1 year old, typically developing). We live in South Carolina and we have a lot of fun in our backyard and on our back porch. Melissa loves to host people, so we have a lot of get-togethers with friends and family. I work full time as a counselor integrated in a primary healthcare setting, with children, families, and adults. I am working on my Ph.D. at the University of South Carolina and I also work as a research assistant within my program (I know, I know, work much, Dad?). While I continue to work on skills as a play therapist in training, one of my favorite therapeutic activities with kids is observing or collaboratively playing in the sandbox. I am consistently amazed at children’s profound ability to communicate, learn, and even heal through play. Such a privilege to be with them at those times.

One interesting thing about our family is that, starting in my master’s program, about five before we had Wesley James, I began my research interest in families of children with disabilities, and Melissa worked as an assistant at a school for kids with special needs. Back then, we talked about how we could possibly adopt a child with special needs some time down the road. Low and behold, a few years later, we had one of our own, and it has been a wild ride ever since. My research interest has grown since becoming an “insider” and I hope to continue in both research and practice with families of persons with disabilities. My current study is about strengths and difficulties of typically developing siblings (currently 4-7 years of age) of persons born with lifelong disabilities (limited to the USA). I have included a link in case anyone reading this is eligible to participate: https://www.surveymonkey.com/r/SibStrengthsAndDifficulties.


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Miggy: Welcome Rufus! I’m so excited to have a father’s perspective today as I believe you are only the 3rd father to have participated in the spotlight series. Can you take me back to the day you found out your son Wesley had Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Rufus: Shortly after he was born, I drove to the hospital where he had been flown. That is where I found out he had down syndrome. Mel, my wife, had a c-section and was unable to come with me to the hospital where our son had been air lifted. I had just started a new job too. I had a sense of peace I would have not had if I was still at my former job. I felt like I had to be strong, thankfully there were some action steps I could take to meet my need to be useful (Ronald McDonald House reservations anyone?), while getting ready to be present with my wife and push her around in a wheelchair. As far as how I feel now, I have fun; with three kids and host of responsibilities, sometimes a tired kind of fun :).

Miggy: What are the biggest worries you face for Wesley? On the flip side, what are your hopes and dreams for him?

Rufus: My biggest fear is that he will figure out how to unlock and open the door while we are not looking and wander off, get hit by a car, or get lost. My hopes and dreams for him are that he will love Jesus, be kind, and hard-working to his potential.

Monday, November 13, 2017

Smartgurlz for Smart Girls

This Little Miggy || Smartgurlz
This post is sponsored by Smartgurlz. I only work with brands and products I believe in and as always all opinions are my own. Thank you for supporting sponsors here on This Little Miggy.

As a child of the 80's, remote controlled cars were a big thing when I was a kid. However, the only people I knew who actually had remote controlled cars were boys. I liked driving them and playing with them, but I never had much exposure other than the occasional, OK fine you can have a turn, which usually lasted less than 30 seconds. I never asked for a remote control car for my birthday or Christmas. Again, I didn't have enough exposure to know if I would have really enjoyed owning one, but also, I would have never thought to ask for one. In my mind--and looking back this was also what I assumed everyone else thought--remote controlled cars were for boys. And I'm pretty sure they were intentionally marketed towards boys as well.

These days most people I know care a lot less about boys playing with "boy toys" and girls playing with "girl toys." It's OK to let kids play with either, both...whatever they want! Which is great--let's continue to encourage kids to explore all areas of play and freely enjoy their interests regardless of gender stereotypes. In reaction to this more open line of thinking, some toys have become a little more gender neutral, while other toys have actively included separate lines aimed towards boys and girls. And you know what--I like both approaches!

In thinking back to my 8-year-old self, most remote controlled cars could easily have been considered gender neutral. A black car, a green car... yeah I suppose those weren't necessarily screaming boy, but they didn't really feel accessible to me either. But if there had been a pink remote controlled car with hearts and gold lightening I would have for sure wanted that car. And, although I wouldn't have realized it, I would have also felt that the world was telling me, Hey! Girls can have remote controlled cars too! My point is, sometimes the answer is more gender neutrality, but sometimes it's about making a toy that once might have been targeted to a specific gender and rethinking how it could be redesigned to appeal to the other gender as well. Whether I like it or not (and truthfully I don't care) my girls still tend to gravitate towards toys that are considered traditionally feminine.
This Little Miggy || Smartgurlz
Which is why I absolutely love this truly amazing new toy from Smartgurlz, the first coding robot and doll made specifically for girls. This is basically the missing remote controlled car from my childhood acknowledging that 1) girls love toys that drive, 2) girls love STEM, and 3) girls also still love dolls! Yas! Lets put them altogether!

Friday, November 10, 2017

Spotlight Revisited || Aviana


Hi friends, Miggy here. When I don't have a current spotlight I like to feature one from the archives and this is a spotlight I will never forget. It's a story of infertility, adoption and traumatic brain injury, but ultimately it is a story of love. It would be easy to get wrapped up in the unfortunate circumstances of Aviana's short life but I hope you look for and see the bigger picture and the amazing wise words that can only come from a mother who knows. Also, Aviana passed away 4 years ago in October. So this is for Aviana and the special seven years she had with her family. Original spotlight here.

Lastly, 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!

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I’m sitting, staring, and thinking back to these two people I used to know. They were young, spunky and in college, meeting for the first time, only to be married a few years later. The two were fierce, but unknowingly naive in thinking they could plan out how many kids they wanted, and about how far apart, to boot. The two, of course, were us and we ran straight into a wall of reality in the form of infertility. We later chose to adopt. But after surviving that long process, and some pretty weighty bonding issues for me, our daughter was hit by a car and ended up severely brain injured.
So this is our story, the real one, as opposed to the sucky fairytale alternate that has a habit of sometimes running in our heads and wreaking all kinds of havoc.

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Miggy: Jen you have a unique special needs story. Many special needs stories begin at an ultra sound, at birth or a few months later as life unfolds. Your story starts with a car accident. Can you take us back to the day of the accident, the day your life changed forever? When did you know this accident was going to be life-changing and how did you cope?

Jen: Our daughter Aviana was out with my mom and step dad for the day while I was out shopping for her 3rd birthday party decorations. I had forgotten my cell phone in the car, and when I got back, I had numerous missed calls. The first was from my mom, and when I checked the message, I heard the most animalistic screams telling me that a car had hit Gary and Aviana. But it was when the nurse simply asked if I could make it to the ER and wouldn’t tell me if they were ok that I knew something was drastically wrong.

Once at the hospital, the doctor came in and told us Gary was battered and bruised from head to toe, but that he was going to be OK. He said Aviana wasn’t going to make it and that she had taken the full impact of the accident to her head. He said her brain was swelling rapidly. He then explained that, as a last ditch effort, they could remove a piece of her skull, but they had to move quickly, and needed an answer right away. He explained once more, that she would have severe brain damage and he wasn’t sure she would survive the surgery. I wasn’t sure what to do, so I called my husband. He happened to be working in Tahoe that day, so we made life and death decisions over the phone while he was speeding down the freeway. We decided to tell the doctor to go ahead. She ended up having two pieces of her skull removed at that hospital. Once stable, she was life flighted to our local Trauma 1, and had another piece removed the next day.

I coped the best I could. I was initially sick to my stomach because my first thought was; “Wow…we’ve finally come so far on this whole parenthood journey and now this?” I knew I needed to try my best to focus. I was being pulled in so many different directions. Our daughter had just been through a horrific surgery, and my mom and Gary were absolutely beside themselves with guilt and grief --I felt an overwhelming desire to protect them from everyone.

My husband and I banded together as one, and learned everything we could about brain injury and what decisions we should make for our daughter. It was the best way we knew how to cope. Along with that, all four of us got ourselves into counseling right away.


Miggy: How does Aviana's TBI affect her and your day-to-day life?

Jen: Aviana’s brain injury affects many aspects of our day-to-day life. It fires on every level. She is unable to crawl, walk, or pretty much move at all, so she relies on us physically for every one of her needs. Mentally, a brain injury is an interesting thing to keep up with. At first it was a huge learning curve medically, but now it has transformed itself into a conglomeration of school, therapy, nutrition, feeding, doctors appointments, and most importantly - keeping her comfortable. I think the emotional aspect can be the most difficult though. It can sometimes be really hard to sit and stare a brain injury of this magnitude in the face all day long. If you let it, it can easily eat you alive, so we try to focus on the positive, love her the best we can, make the most of it, and realize our lives really could be much worse.

Miggy: What are the biggest worries you face for Aviana?

Jen: When the accident first happened I was a serious worrier. Those first weeks in the hospital, I was a one-woman firing squad. I quickly learned that with brain injury, there are no answers. So, rather than being completely miserable all the time, we were forced to learn to cross every bridge when we come to it. We don’t think much about the future at all, as it proves to be a waste of time, and energy. If the thoughts come to mind, we shut them down pretty fast, as it is not worth thinking about now. But the ones that do enter our mind only to be deflected are: How are we going to manage to carry her when she gets bigger? When is she going to die? She has an unrelated liver problem on top of her brain injury, and due to that is unable to have a transplant, so when is her liver going to fail? These are just a few examples of future bridges to be crossed.

Monday, November 06, 2017

Miggy's Accessible Dream House || Update and Inspiration Pics

This Little Miggy || MIggy's Accessible Dream House Update
photo source

We are finally starting to get the ball rolling on the new house, so I thought I'd give you a little update, as well show you some of my inspiration photos for the exterior. It's been a slow start due to weather and some other things, but man are we anxious to really get going.

They finally did the demo inside and even that has felt like a huge step forward.
The place went from looking like this:
This Little Miggy || MIggy's Accessible Dream House Update

To this:
This Little Miggy || MIggy's Accessible Dream House Update
From this:
This Little Miggy || MIggy's Accessible Dream House UpdateTo this:
This Little Miggy || MIggy's Accessible Dream House Update
And from this: 
This Little Miggy || MIggy's Accessible Dream House Update
To this and this:
This Little Miggy || MIggy's Accessible Dream House Update
This Little Miggy || MIggy's Accessible Dream House Update

Tuesday, October 31, 2017

Happy Halloween

This Little Miggy || Halloween 2017
Happy Halloween!
From Hermione, Moana and our little ballerina

This is the first year we did a Halloween costume that integrated the wheelchair and we love it! Lamp loves it! I put dad in charge and he said he was going to "keep it simple" and I smiled, because I knew that even him "keeping it simple" would be a home run. I did all the painting (and Lamp helped too!) but really, it was all dad.
This Little Miggy || Halloween 2017 Wheelchair Costume
This Little Miggy || Halloween 2017 Wheelchair Costume

If you're thinking that we put a lot more effort into Lamp's costumes than into the other girls' costumes, well you'd be right--ha! But they are both exactly who/what they wanted to be. At first PSP was debating between a few ideas, but then she settled on Hermione. Are you sure? I asked. Because she was Hermione two years ago. But she wouldn't budge. I think since she now has Hermione's time turner and wand this steps it up a few levels. Also, now that I think of it, I had to talk her out of being Hermione last year... it was inevitable.
This Little Miggy || Halloween 2017
This Little Miggy || Halloween 2017
And this little one went through a few different ideas before deciding that she wanted to be a ballerina. And by "ballerina" she meant that she wanted to wear her sisters old dance costume that she wears ALL THE TIME anyway.

"Do you want a crown?"
"No."
"Do you want to wear blush?"
"No."
"Can I put your hair in a bun?"
"No."

And then I realized that I why try to make Halloween harder, when what she wanted was easier on everyone? So here it is.

Here we are.
Happy Halloween.
This Little Miggy || Halloween 2017

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Friday, October 27, 2017

Special Needs Spotlight || Eleanor

Hi! My name is Whitney and I live in the Boise, Idaho area with my husband Joseph and our sweet daughter Eleanor (21 months). Joseph and I both grew up around Boise, attending the same elementary school and middle school. It wasn't until our mid 20s when we met, realized we went to the same schools, began dating, got married and never looked back. In the summer of 2015 we discovered I was pregnant with my beautiful Eleanor. At our 20 week ultra sound, we learned that she had severe lower limb deficiencies later known as her Fibular Hemimelia.

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Miggy: Welcome Whitney and fellow limb difference mom. Let's start at the beginning, can you take me back to the day you knew your daughter would be born with a limb difference? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?


Whitney: The day we found out about Eleanor's condition felt like being blind sided with a baseball bat to the gut. My husband and I happily walked into the doctor's office to confirm the gender and measurements of baby. Our technician began measuring and describing everything to us. We were laughing and making jokes and kept staring at the screen trying to figure out every single detail. At the very end, she began measuring the legs, she kept going back and forth on belly and she became very, very silent. She didn't say anything to us. My husband and I were still smiling and holding hands. Finally, the technician stopped. She told me to go empty my bladder. I hopped off the table and frolicked to the bathroom. I came back quickly to hear more about my sweet baby. She was no longer in the room. She was down the hall on the phone. Finally she came back. She told us our daughter had missing fibula bones (the calf bone) in both legs, very short tibias (the shin bone) in both legs, no foot on the left side, and only 4 toes on the right side. My smile vanished and I became very confused. While I was in the bathroom we learned, she was on the phone with my OBGYN, he wanted to see us immediately.
Miggy: Could you please educate us about your Eleanor's diagnosis and explain how her needs affect your day-to-day life? 

Whitney: Fibular Hemimelia is the absence of the fibula bone. It affects 1 in 40,000 people unilaterally, most being male. Since Eleanor is affected bilaterally, and is female, it makes her condition a little more rare. At 13 months we came to the super difficult decision to have her little feet amputated. We flew to Salt Lake City (the closest Shriner Hospital to us) to have her surgery done by the best surgeon we could ever imagine. She was put in a Spica cast for 4 weeks. After her cast was taken off, a month later, she was fit for 2 prosthetic legs and has been kicking butt ever since.

Monday, October 23, 2017

Balancing Technology

This post is sponsored by Utopia360°. As always, all opinions are my own. Thanks for supporting sponsors here on This Little Miggy.

When my first daughter was little, we started going on frequent road trips as a family. This was in the olden days before ipads and kindles, therefore my husband suggested that we buy a portable DVD player for her to watch actual DVD's on during our road trips. The idea being that watching a show would make her happier, and thus every person in the car happier, while we sat in a small confined space for hours on end.

In my infinite wisdom I said, Absolutely not. I didn't want my kids dependant on technology. I recounted to him stories of the childhood road trips--at least 2 each summer traveling back and forth to my dad's house where I spent my summers--when I had nothing but a book, a pillow, maybe some janky dollar store type toy and eventually--after years and years and years--a fancy, tape playing walkman. I wasn't one of those kids who was catered to by the adults in my life with road trip games and entertainment. I entertained myself, and my kids could learn to as well. If she couldn't be content with some squeaky toys and beautiful vistas on her right and left, then she was just plain spoiled.

Obviously, this story takes a sharp u-turn as I believe I caved to the idea of a DVD player almost immediately. We marvel at that first 4 hour road trip with our nearly comatose toddler in the backseat completely zombie-eyed staring at a screen for 4 hours while the husband and I chatted  uninterrupted, commenting more than once, "It feels like we're on a road trip by ourselves!" Which, to be clear, is the exact goal of every parent who road trips with their children--to feel like the car is occupied solely by mature, adults who engage in respectful, quiet and civil conversation.

I conceded, with some reluctance, that perhaps there are some benefits to living in the 21st century.

What I'm saying is that I'm picky with technology when it comes to my kids.

What I'm also saying is I LOVE YOU TECHNOLOGY THANK YOU FOR MAKING MY LIFE WITH MY KIDS EASIER PLEASE DON'T EVER LEAVE ME I WOULD LITERALLY DIE WITHOUT YOU.

As you can see it's a delicate balance.

As ironic as it is for someone who spends a good amount of her time blogging and on social media I will probably always have this struggle with the overwhelming amount of technology in our children's every day lives and how to maintain a balance of screen time vs. real world time. Maybe it's not ironic. Maybe my job makes me more acutely aware of the struggle to access the best of what technology has to offer us, while at the same time keeping boundaries in place to keep my children (and myself) from overusing and abusing technology. Not to mention being present in the real world cultivating, real relationships. The TV does not go on in our house without permission. Same with the computer. None of my kids have their own iphone, iPad, kindle, laptop (yet) and they are not allowed to keep the shared devices we do have in their rooms. Also, we haven't ever owned any sort of gaming console.

Of course there are so many amazing experiences and benefits that modern technology can bring into our lives, things that still feel like a Jetson's type reality to this child of the 80's. We are living in the future and it is amazing!

Enter Utopia 360° 4-D+ Augmented and Virtual Reality bundles. This is technology and education coming together to give kids a uniquely modern learning experience. There are three bundles available--Animal Zoo, Dinosaur Experience and Space Exploration. We received the Dinosaur Experience and the Space Exploration bundles.  Each set comes with a pack of augmented reality flashcards and a VR headset. You also need to download a free app for each learning pack. Once you have the app downloaded you can look at the cards through the app and suddenly you have a dinosaur on your dining room table! (But not really! But yes really!)
You can use the screen controls to navigate the dinosaurs, to see a skeleton version and at the same time learn facts and history about each dinosaur.