This Little Miggy Stayed Home

Friday, November 09, 2018

Special Needs Spotlight || Crew

This Little MIggy || Special Needs Spotlight || Crew
Hi everyone. I want to start by sharing that I had read and loved Miggy’s blog years before our family became one with special needs. I distinctly remember wondering if, faced with a similar reality, I would be able to be as resilient and brave and amazing as Miggy and other moms who shared on her pages. I have to believe it’s because of them that we are navigating our “special” with any measure of the same. We are a family of four living in western Washington state. Being outside, traveling with family, finding humor in life, and impromptu dance parties are some of our favorite things. Our son, Crew, was diagnosed with type 1 diabetes last September, and this is our story! 


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Miggy: Welcome Camery and thank you so much for being part of the special needs spotlight series and sharing your family's, and especially your son, Crew's foray into type 1 diabetes. Can you take me back to the period of time from when you knew your something was off about Crew to when you got his diagnosis? What were those first red flags and how did you feel when you got his diagnosis? Can you compare those first thoughts and feelings with how you feel now?


Camery: Thanks, Miggy! We are still fairly new to type 1, just a little over a year now, so a lot of those memories and feelings are easy to recall. Summer was winding down, although we still had a couple of adventures to cross off of our summer bucket list. As we swam and hiked and played I noticed he seemed a little ‘off’. Usually the first one up for an adventure, I was now finding him on my lap, or asking to be carried, or resting on the couch. We went on our first BIG camping trip and he didn’t perk up at all. I attributed it it to the end of a busy summer and let him go at his own pace. But my concern was piqued.

He wet the bed for the first time in his life one week before his fifth birthday. And then a second time. He was always thirsty. So, incredibly thirsty.

We measured Crew on our family wall for his 5th birthday a couple of weeks later and realized he had grown nearly four inches in one year. That had to explain why he was suddenly looking so thin, right? Walking up the stairs that night he collapsed from exhaustion. His little body just couldn’t even move. I carried him up to bed and something in me knew things were about to get really real, really fast. I worried he wouldn’t make it through the night so I called a wise friend. When told her I thought Crew maybe had type 1, she paused and told me she had some family in town visiting: one, a registered nurse, the other, a type 2 diabetic with testing supplies to spare. They arrived in minutes and as her nurse sister poked the finger of my lethargic and unaware child, she told me the meter would only give a blood glucose reading of up to 500. Anything else would only show HIGH. Seconds later the screen lit up: HIGH.

Monday, November 05, 2018

Accessible Home Update || Universal Design

This Little Miggy || Accessible Home Update
We are renovating a 1961 mid century home and gutting it from top to bottom. In addition to be a dream house, it's also going to be an accessible dream house. You can follow along from the beginning here and here with bathroom inspiration here and here, and kitchen inspiration here.

I snapped the above photo of Lamp the other day while checking out the house and I thought, We did this for you kiddo. We designed this whole house for you.

Which is true, and false and a grossly unfair statement to make all at the same time.

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In 1988 the National Multiple Sclerosis Society flew a man (whose identity I don't know) out to New York City to receive their "Man of the Year" award. They put him up at the hotel across the street from where the gala was to take place. However, getting across the street to receive his award would prove to be a difficult task as the man drove an electric wheelchair. There were no curb cuts in the side walks back then, taxi's could not accommodate his heavy, battery-operated chair and buses didn't yet have wheelchair lifts. Eventually the MS society had to rent a van with a hydraulic lift simply to deliver this man across the street so he could receive his award.

Story paraphrased from the book No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro

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What does it look like to design a house for a family of five, but with one person's needs being the predominant driving force behind every decision?

Well it looks like tearing a wall down and rebuilding it 6 inches away. It looks like widening all the door ways and making sure there is a bathroom on both floors with a 5 foot turning radius to accommodate a wheelchair. It looks like a custom vanity in the bathroom and meeting after meeting after meeting on the kitchen island with contractors, designers and even the stone fabricators to make sure it is as functional as it is beautiful. It is concrete ramps and removing trees to grade the wooded lot so part of it is actually flat, a.k.a. accessible.

It is also looks like talking through with your husband over and over again about how a particular space might be used and navigated by this one family member. How is it navigated now? How will it be navigated in the future? Will she use her new chair, will she use her old chair, will this even matter? And of course it looks like talking with this family member herself. Because while she is only 8, she is also the world's foremost expert on being herself.

It looks like a heart to heart with your contractor discussing the fact that while you're sorry for second guessing everything and last minute decisions you've never done this before and you don't know if you're doing it right.

And of course it looks like a damn elevator smack dab in the middle of the house because we fancy like that.

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When Lamp was a baby--long before I the entirety of her needs would come into focus and long before a more developed understanding of disability and even longer still before I even thought about something as abstract to me as disability rights--I remember reading a story about a girl who was disabled, in fact I believe she had limb differences, and her parents fighting for her to be on her high schools cheerleading squad. I was the mother of a new baby girl with limb differences, but I had also been a high school cheerleader. Internally, I felt a sheepish guilt for having a daughter with special needs, but also believing these parents were off base. Cheerleading was a competitive sport at my high school with our varsity squad often taking 1st in State. Their stunts were amazing, as well as difficult and dangerous. At the very least, you needed long arms and hands to do cheerleading I thought. It's just a requirement. It's not personal. It's the nature of the sport.

In their response to critics about their daughter lacking the basic requirements of what is needed in the sport of cheerleading (ie--arms and hands) the parents said (paraphrasing), "If we go by the current standards of what a person needs to participate, then she'll never get to do anything."

Holy $&#@. 
They were right.

*****

Friday, November 02, 2018

Special Needs Spotlight || Ashlee

This Little Miggy || Special Needs Spotlight || Ashlee
Hi! My name is Teal, and I'm going to tell you about my youngest daughter Ashlee. She's a really special little girl with some really special struggles, but she's almost always got a smile on her sweet face. We live in Mayfield, KY with my husband, and her 3 siblings. I'm excited to give you all a small peek at our lives!

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Miggy: Hi Teal and welcome. First, I love your name and second, thank you for being here today to talk about your children, primarily your daughter Ashlee. Let's start at the beginning, when did you first learn that your daughter would have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Teal: Ashlee's troubles really started to become obvious right after she started kindergarten. She started having terrible, violent mood swings. It was so scary to watch my sweet little girl suddenly start screaming, hitting, kicking, and biting only to burst into tears while hugging me and apologizing because she didn't mean it. Soon after she started to stumble and seem weak, followed by loss of bladder control. That was a whole new source of fear and pain for us.

Now instead of focusing of the bad, we spend that energy making the best memories that we can for all of us.


Miggy: Your daughter has a rare diagnosis called Unspecified Neurodegenerative Disorder that results in Encephalopathy, Cerebellar Ataxia, Ocularmotor Apraxia, Dysphagia, Tremor, Insomnia, and Developmental Regression. Can you please educate us about your daughter's condition and how it affects your family's day-to-day life as well?

Teal: Her condition causes a lot of damage that you can't see by just looking her. Her brain is being damaged a little at a time. The cerebellum in particular is being affected the most right now, and it causes global low tone and an inability to control her movements properly, even the muscles that control her eye movements. The doctors have described her muscle control as being similar to Muscular Dystrophy. She gets fatigued really easily, and uses a wheelchair for long distances. She also just got her first SMOs to help with her ankle stability as she walks around the house. She can no longer take anything by mouth, and gets all her feedings and medications through her Mic-Key button [also known as a g-tube or feeding tube]. She also has several mental delays. She's 9 years old, but her understanding is that of a 3 year old and socially she is around 2.

On an added note, things haven't been going very well lately. We had to make the hard decision (along with her specialists) to remove Ashlee from school. A few weeks ago she became frustrated and overwhelmed and she attacked a much smaller boy. She's starting "home hospitalization," so her teacher and therapists will be coming out to the house a couple of times a week.

Thursday, November 01, 2018

Happy Halloween

This Little Miggy || Halloween 2018
The day before Halloween was a near perfect fall day with blue skies and a slight chill that gave way to a warm afternoon that had parents peeling off their sweaters at school pick up. "Why can't Halloween be today?" Many of us bemoaned as rain was on the forecast for Halloween. And it did rain. It was overcast, but luckily not cold. Also, while it rained it was mostly a light drizzle with only a few real downpours. Rainy but not cold, moody and overcast--it's not perfectly ideal, but also not terrible. It was a little sweet spot that felt just right for Halloween.

A while back on Instagram I talked a big about how amazing Lamp's costume was going to be. I had plans to integrate her wheelchair like we did last year--in my head it was going to be amazing. And Lamp was on board. And then she wasn't. She reasoned that if her chair was too fancy people wouldn't really be looking at her. They'd be looking at her chair. I tried to convince her a couple more times but her initial acceptance turned into a hard no. And so of course, we relented and let her lead the way and do Elsa her way. (Although the white hair wasn't quite what she imagined as she quipped, "I don't look like Elsa. I look like a grandma dressed as Elsa!") She looked beautiful.

PSP came up with her costume all herself spying the mask and wings on sale at Michael's. For the record she is a black swan. Not THE black swan, just a regular ol' random black swan OK?
This Little Miggy || Halloween 2018

Monday, October 29, 2018

Parenting Hack || Book Planting

This Little Miggy || Book Planting
This post is sponsored by Magination Press Family who is dedicated to growing healthy minds in kids and teens. As always thanks for supporting sponsors here on TLM as it allows me to keep creating content I care about. All opinions are my own.

Remember in the original finale of Gilmore Girls (spoiler alert!) where Rory is about to leave for her first real job and Lorelai is saying how she feels like she doesn't have enough time because they thought they were going to have the whole summer together and she still has all these important things to tell Rory about life and work? Lorelai's frantically running through a last minute list of do's and don'ts including keeping a stash of zip lock bags handy and offering to give her the orange sweater she knows Rory wants when Rory gently cuts in and says, "Mom, you've given me everything I need." That moment. That moment is the moment in life I can only hope to have with my girls someday. That moment when I send them out into the world knowing I have given them everything they need to conquer the world. (Hopefully they will be a little more triumphant than Rory because if they're couch surfing and hooking up with high school boyfriends in their 30's I shall question every decision I ever made.)

I find myself making frequent mental notes about important things I need to teach my children, many of these concerning some of the more "delicate" conversations of life--periods, bras, friends, kissing, consent, peer pressure, crushes, popularity and on and on. However, I spend even more time wondering how I'm going to bring up these topics in a "natural" setting where it doesn't feel like an awkward 80's tampon commercial.

Of course this extends beyond "delicate" conversations as well--disability, kindness, technology, disconnecting from said technology, health, happiness--you know, just all the things. I want to be able to talk to my kids about all the things and yet sometimes kids do not want to talk about all the things. It's like they can immediately sense any topic that might slightly overlap with the word puberty on a ven diagram and they shut down quicker than a whorehouse during the Rapture. (Sorry but I couldn't think of anything else.)

One really great solution I've found to conversations starters are books, more specifically planting books. Yes planting them like a crooked cop. Except you're not a crooked cop, you're a mom who cares about her kids health and well being. Sometimes I plant said book right in my kids hands, "Here I got this for you. Thought you might like to read it." Other times I just casually leave it by their bed and see if they've had a chance to look through it.

Friday, October 26, 2018

Special Needs Spotlight || Zoey + Ruby

Hi, my name is Sasha. I have a hilarious husband and five awesome kids, including two little girls, Zoey and Ruby, with Down syndrome!! Our life can be a little loud and super crazy, I wouldn’t have it any other way! Homeschooling keeps me quite busy, but I also like to do creative/crafty stuff and have a strong passion to share and advocate about Down syndrome! I’m obsessed with taking photos and making videos which I share on Instagram and YouTube!

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Miggy: Welcome Sasha! So glad to have you here today. First, can you take me back to the day you found out your daughter Zoey would have Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Sasha: It was October 22, 2009. I was awaiting amniocentesis results, the doctor called and got to his point quickly, saying, “I’m sorry, your baby does have Down syndrome.” I’m not sure I actually felt anything. I held back tears, then called my mom and couldn’t get the words out--the tears came instead. Looking back over the years I’ve recognized that I was scared--of all the unknown things. I just had no idea the world my daughter was about to pull me into, then in January she was born. I only got to hold her for a couple minutes--but she looked into my eyes and I into hers and I felt something incredible! I knew we were all going to be perfectly fine!
Miggy: Having a daughter with Down syndrome inspired you to adopt another child with Down syndrome, your daughter Ruby! How did this decision come about and what have you learned through this process?

Tuesday, October 23, 2018

Fall Staple || The Slanket

This Little Miggy || Slanket
My favorite purchase from last fall was this enormous sweater pictured above. It's an XS and still so outrageously huge. People compliment me on it often and my go to line is something like, "It's just a wearable blanket really," and then we both chuckle in that way you are forced to chuckle when an acquaintance makes a dumb joke. But that's really what it is--a sweater that's also a blanket, thus a slanket (a term my husband coined.)

These oversized sweater coats (what the layman calls them) are everywhere these days and they really are just as good as they seem. So cozy, so warm and so snuggly. I wear mine when I go out and I wear mine for an evening at home. I rounded up my favorite slankets in a range of prices for you to check out below. Remember these are not just long cardigans. Think chunky, oversized blankets that just happen to have sleeves. Ladies who find themselves in a perpetually cold office or (ahem) church, take note. Also great for Fall enthusiasts everywhere (which should cover the rest of the population). What about you? Are you a fan of the huge, oversized sweater?
This Little Miggy || Slanket

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