Thursday, April 27, 2017

Limb Difference Awareness Month || What's Really Wrong

This Little Miggy || Limb Differences Awareness Month
What's wrong with you?

What's wrong with you?

What's wrong with you?

Staring. Staring. Pointing. Whispering.

What's wrong with you?

Imagine being asked that question on a semi-regular basis. Now, imagine being asked that question on a semi-regular basis, by complete strangers. Finally, imagine being asked that question on a semi-regular basis, by complete strangers, and you're only 6 years old.

What does that do to a kid? What does that do to a person over a lifetime?

I don't know, but it's been on my mind a lot lately. I'm not just worried about what that does to a kid or a person... I'm worried about what it will do to my kid, my person. Because this is my daughter's reality.

Over the years I've shared our journey of fear to love and I've tried to talk really positively about disability, because I feel positive about disability. While I agree that disability can still be a complicated issue--for example, I certainly would have a hard time if I lost an arm or the ability to walk and some families do struggle more under the weight of caretaking and the medical costs--I no longer view disability as inherently negative and I certainly no longer see disability as an inferior experience in the human condition. A person in a wheelchair in not inherently inferior to a person who can walk. A person with intellectual disabilities is not inherently inferior to a person with a higher IQ. From day one I have always tried to communicate the love, the humanity and even the normalcy of disability because disability is normal part of life.

But sometimes I fear that I've sugar coated it. Specifically I fear that I've sugar coated what it's like to have a child with a disability in a world where disability is rarely represented and if it is, it is most often seen as inferior, sad, undesirable, and wrong.

*****

It occurred to me recently that my identity as mom is most often preempted with special needs mom. I am a "regular" mom too but in the context of motherhood, I can never seem to shake the "special needs" prefix. Do I care more about being a special needs mom than a regular mom? Does everything that comes out of my mouth have to be about disability or special needs? Why is this badge of special needs parenting so important for me to wear all the time?

I sat on these questions for a few days recently.

And during this time we went somewhere as a family and there was a little boy who started saying things about Lamp that were rude-ish. I don't remember seeing his family anywhere, and in fact I barely remember this situation. It's all blurry around the edges because I've dealt with it a hundred times before. (Note: I was going to say a million times, but then I thought "I don't want to exaggerate." So I said a hundred times and now I've underestimated.) But once again I had to educate this young boy while at the same time protecting my daughter's feelings and sense of self.

As soon as that exchange was over I immediately thought to myself, Right. That's why.

Motherhood asks a lot of us. I remember being a mom before I was a special needs mom and it was hard all on it's own. It truly was. But being a special needs mom asks a lot more of me. Strangely, it's not in the ways I thought it would be.

It's not hard being Lamp's mom. But sometimes it is hard being Lamp's mom in a world that doesn't acknowledge her or people like her on a macro level.

Because when we don't acknowledge people who are disabled by having them in our TV shows, in our magazines, in our children's books, in our commercials, and more importantly in our classrooms and workplaces, then we often have an overabundance of acknowledgement on a micro level, particularly when we go out in public. People--typically other children, but also adults--point, stare and whisper because they have literally never seen anyone like her before.

This Little Miggy || Limb Differences Awareness Month

*****

Monday, April 24, 2017

Art-a-Thon

Coming down off of an art-making high from this weekend and feeling so good. Creating is life. It makes me feel alive. I really think most people are built with an innate desire to create regardless of whether you typically consider yourself to be a creative person or not. And this past weekend I created. It had been years but I finally had another art-a-thon and I'm so grateful we did it.

Some of you may remember my art-a-thons from years past (here, here and some work here) but just in case I'm going to quickly explain what an art-a-thon is, why I started doing them and why I think you should try your own create-a-thon of some sort.

What is an art-a-thon?
An art-a-thon is where I set out to complete a certain amount of paintings--usually 3-5--in a 24 hour period from start to finish. I still sleep, but my husband takes over all childcare and household duties for that period of time so I can simply focus all my time and energy on painting and producing art. I usually start in the afternoon one one day so I have that entire afternoon and evening to paint, and my work has a drying period while I sleep. Then I can wake up and still have several hours to finalize my work.

Why do an art-a-thon? 
Early in my mothering career, I was keenly aware of how fragmented my time suddenly became as I was constantly at the mercy of little ones whose needs ebbed and flowed by the minute. Painting--my first love and college major--became increasingly harder for me to do. Sketching ideas, setting up my workspace, actually painting, and then cleaning up... it was too much to do when I often felt like I didn't have a solid block of time to make any real progress. Of course, there are plenty of mama's who have the same limitations and manage to produce work in these little bits of time, but for me and for my personality this was huge road block. Additionally, because I was stopping and starting so frequently my work often felt fragmented and incomplete as well. While I usually do work on my paintings in phases, the inconsistent nature of these time blocks when I felt like painting were fewer and further between, and more often than not my paintings weren't coming together and I would eventually just abandon them.

Friday, April 21, 2017

Spotlight Revisited || Dakota

Hey guys, Miggy here. When I don't have a current spotlight I like to re-post one of my past spotlights and I think Dakota's story is an important one to revisit. When most of us think of special needs and disability, we tend to think of conditions and syndromes we were born with. But as I've said many times the disability community is one that any of us or our loved ones could join at any time. Gosh, I hope that doesn't sound threatening or anything, because as always what I hope to do through this spotlight is to change peoples hearts about what it means to be disabled. When Dakota was just 2 years old a fence came crashing down on him and changed his life and his parents lives forever. While I don't want people to fear disability I also know that a life-altering accident and injury certainly carries sadness, fear, heartache and pain. But the reason I think this spotlight is so important is for all the implications it carries in regards to our typical views of disability. No one would ever want this for their child--Dakota's mom and dad didn't want this for him--but life goes on and the love is still there. We cannot prevent or predict everything--certainly not with an ultrasound or even healthy check-ups--but time and time again love seems to be the thing we can count on the most. For the most recent update on Dakota be sure to check out his mother's blog post here. You can see the original post from 2012 here. 

Zach and I met in South Dakota while I was going to college there and he was serving his mission [for the LDS church]. (It wasn't like that :) ) When he got home a family in my home ward got us talking and it was all history from the very first phone call. We got married January 2007 and had our sweet little boy Dakota August 2008. We have had some drastic changes in our lives. Zach had some fluke thing in August 2009 that left him legally blind. Dakota had a fence fall on him November 2010 that left him with an anoxic brain injury. Needless to say, life has thrown us some major curve balls but we are doing the best we can...and leaving the rest up to the man upstairs. Read more about our family here.
***************

Miggy: Tessie, you have a different experience from any other child I've spotlighted so far in that your son Dakota's special needs came about because was injured in an accident. Can you take me back to the day Dakota was injured? What happened, and when did you know this was a life changing accident?

Tessie: It was the day after Thanksgiving 2010. We were down in AZ visiting my family. That day we were setting up outside of my parents’ home for my brother's wedding reception. My parents live on 5 acres but the main part of where most everything is, is about 2 acres. There were a lot of people there helping to set up. Dakota had been outside playing with his 3 cousins. At the time of the accident I was in the house cutting up vegetables.

 My husband Zach (who became legally blind about 2 1/2 years ago) came inside to ask me to go check on Dakota because he hadn't seen him in awhile and it's hard for him to be able to see him amongst all the people and the amount of space to cover. I went out expecting to find him playing around but as I kept looking back by the barn and hay I didn't see him. I saw his then, 1-year-old cousin playing by himself and no Dakota, which I thought was weird. My dad had gone around the hay into the pasture so I thought maybe he had followed him. I went back there but my dad had said he was playing by his cousin last he saw and then I started to panic a little bit. As I walked back around where his cousin was playing and smiling I noticed a little cowboy hat under a fence panel and then I spotted Dakota's little body lying underneath it. I ran to him and picked him up but his body was lifeless. His face was without color and I just screamed for help. A friend of the family's ran to my aid and immediately began to give him CPR. The ambulance came and continued but at that time we had seen no change. Luckily there was a hospital just a mile or two away and it was there where I found out that his heart had started beating again and he was alive. They then had to life-flight him to a specialty trauma hospital in Phoenix. It was there in the waiting room when the doctor came and spoke to us that I realized that our life had just changed. I had no idea to what degree and still am trying to figure it out.

They explained that there were no physical or internal injuries but that somehow the fence had been in a spot that made him unable to breathe which resulted in him having an anoxic brain injury (which is just a fancy way of saying his brain was without oxygen for a period of time). At that point they weren't sure if he would survive the brain swelling that would continue over the next 3 days and if he did, they weren't sure how much damage would be done to his brain. Over the 6 weeks that we were in the hospital there in Phoenix and then in Salt Lake City (when he was stable enough) it was a continued just watch and see and no one knows exactly what will result. We were told that the brain takes up to a year to heal from these things and that every child is different. Because he was a child and not an adult he had a better chance of recovery but there is never a black and white picture of how it would be. Although it has been almost a year and a half we continue to see little baby steps of progress but of course hope that we will see more. We won't give up hope that Dakota will one day be able to walk, talk, eat, and play again so we continue to do therapy with him EVERY day to help give his body and brain the best possible chance of whatever recovery he can get.


Miggy: Explain what Dakota's specific special needs are and how they affect your day-to-day life?

Tessie: Dakota has a lot of needs that affect our life dramatically. He went from being a healthy independent 2 year old to being completely dependant on us for everything from moving, to eating, to bathing, to playing, etc. He had to have a trach put in because he had lost his ability to swallow properly and his saliva would get into his lungs and he was unable to cough it out. So the trach is needed to suction out his lungs. He has improved a lot in his ability to cough and swallow but he still needs suctioned several times a day. Because of the trach there are a lot of cares and precautions that have to be taken and we can no longer ask just anyone to babysit. Only people that are trained with trachs can watch him so it is really hard to be able to go places like we used to. Also, because of the trach he has to be on a humidifier at night and so just quick overnight trips or sleepovers are not easy like they used to be. He is also fed through a g-tube now. I personally blend up all of his food instead of giving him the formula so to go anywhere we have to be very prepared with meals blended ahead of time and packed in a cooler. No more stopping at a drive through or handing him a sandwich. There is SO much to bring everywhere we go and on top of it all he can't walk or get around by himself so we are either carrying him or pushing him in his stroller. Most every day is planned around him. There is a lot of therapy to get in every day so we have scheduled helpers that come help me with therapy every day because a lot of it I can't physically do with just 2 hands and Zach is busy working. So each day we have that scheduled in so it is hard to just go and do things on the fly like we used to.

Tuesday, April 18, 2017

Do || How To Resize Your Hat Smaller

This Little Miggy || resizing a hat smaller
I bought this vintage hat online a while ago and it ended up being too big. I was bummed, because I couldn't return it. It's one thing to stretch a hat to make it bigger, but how do you make a hat smaller? Well it has sat around for about a year because I didn't think it was possible, but I was wrong! It is possible to size a hat smaller and I'm going to show you how to do it today. Super simple.

First you buy a little something called hat size reducer. It's basically foam tape, but a little softer than what you would find at the hardware store. It should be noted that this won't work if your hat is drastically too big.
This Little Miggy || resizing a hat smaller

Friday, April 14, 2017

Special Needs Spotlight || B

Hi, friends! My name is Anne Cropper. My husband, Taylor, and I are raising our five children (ages 10, 9, 6, 4, and 1) in Southern Oregon. As we have learned SO much in the last year about our oldest son, B's special needs, I have felt strongly to share our experience in hopes that it might help others who are trying to navigate these difficult and often lonely waters.

***************

Miggy: Hi Anne and welcome! I'm so excited to be featuring you and your sweet family here today, especially your son B. Can you take me back to the day you knew something was not quite right with B? What were some of the first red flags you had? And how long from those first signs to getting an actual diagnosis or a doctor’s confirmation that something was not quite right? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Anne: When B was three or four I began to realize the depths of his precociousness and strong personality. He had been speaking completely fluently since two, and had an exceptionally bright mind. He would ask questions like, "Mom, how you do say 'indigo' in Chinese?" He was also quite rigid and inflexible. A change of plans or leaving a fun play date could make him come unglued. But a lot of children at that age are like that, so I just thought he had a little extra stubbornness that I needed to break him of, so to speak. People say you’re supposed to choose you’re battles. With B, there were a lot of battles and I chose almost all of them. Wearing socks, eating, combing his hair, going to school. For years I saw these as battles I needed to fight and win. And for years we struggled.

It was two years ago, when B was turning nine and in the end of third grade, that we began to realize that we were dealing with more than a stubborn, strong-willed child. Unwilling to complete a task in Math that he deemed too easy, he crumbled up the assignment and threw it at his teacher, and then sat in the principal's office and told him, "School is legal slavery." Around the same time, my husband went to pick him up from cub scouts and walked in to find him angrily berating the scout leader for something that hadn’t gone like he wanted. A lot of kids melt down or disobey at home, but then pull it together in school or in public settings, B struggled equally in and out of the home and these two incidents led us to the conclusion, that he really didn’t have control over his emotional outbursts. The frequency, intensity, and duration of these episodes continued to increase, and things hit their peak about six months ago. On most occasions, after these episodes he’d spend hours crying and lamenting his inability to control himself. This was one of the hardest things to watch as a parent—the external consequences of his behavior were hard, but the suffering after the fact was possibly worse. We came to see that this was a bigger challenge than we had the capacity to understand or deal with on our own and decided to look for help.

We started with our wonderful pediatrician who connected us with the group’s in-house psychologist. He referred us to an outside psychologist whom we started seeing weekly for about two months. This was a huge turning point in this whole experience, perhaps most significantly for me. She explained that in spite of being really advanced in some areas, he had certain lagging skills in the areas of cognitive flexibility and emotion regulation. To have her show me the parts of the brain this was in and explain that this was in his DNA was a life-changing experience. For most of B's life I had butted heads with him and wished to "break" him of these behaviors. She helped me see that just as no amount of threatening or bribing will make a child with dyslexia learn to read faster, carrots and sticks can’t work for children with lagging mental and emotional skills. Just like all skills, they needed to be learned.

Once I saw his struggles in this light, I became his champion and advocate. My heart changed, our relationship changed, and I had a new set of tools to help him develop the skills he was lacking. I began to fight for him so he could be more successful in the world. During this process we had moved to get him into a different school that we thought would meet some of his needs better but he was really struggling with the transition and things went backward for a while.

He was refusing to participate in certain tasks and getting in trouble on the playground. His new teacher and the administrators were unclear about how to help him and, honestly, since he was brand new, I think the teacher felt a bit like I once had like, "Who is this defiant punk?!"  I knew that I needed to help them see the B that we see--a boy who is sweet and bright, but who needs some extra help in certain settings, and I knew that in order to have them make any modifications for him, we needed a diagnosis and an individual education plan (IEP). In Oregon you cannot get at IEP or 504 plan (Google it) without an official diagnosis. After a lot of reading and living with B for ten years, I felt fairly certain that B was on the Autism spectrum. We got an appointment with the only doctor in our area that can diagnose for Autism, and, interestingly, he did not give us the diagnosis I was expecting. Because B is so empathetic, so remorseful following his episodes, so physically affectionate, has no trouble with eye contact during a conversation, and can eloquently articulate how out of control he felt after the fact, the doctor didn't think Autism was the right call. Instead, he diagnosed him with Disruptive Mood Disregulation Disorder. Yeah, it's a mouthful!

Thursday, April 13, 2017

Limb Differences 101

This Little Miggy || Limb Difference Awareness Month
Happy Limb Difference Awareness month!

How should one celebrate Limb Difference awareness month? I don't know. Don't go removing any limbs or appendages or anything... that would be super inappropriate. (If however, it happens accidentally WELCOME! You're now a member of the limb difference community!) Let's just stick to saying Happy Limb Difference Awareness Month and leave it at that shall we?

To be honest I didn't know April was LDAM until just recently. However, I wanted to take the opportunity to share some thoughts and feelings about limb differences here on the blog this month as this is something very near and dear to my heart. I'm not going to get all medical and statistical about this--although I will post a few good links--but really, I'm just going to tell you what I know and what I've learned.

First, I thought it might be best just to talk about limb differences themselves. What are they? What causes them? Why don't you just print a 3-D printed prosthetic hand on Lamp and call it good?

What are Limb Differences?

"Limb differences" is a big umbrella term to refer to anyone who might have 1 or all 4 limbs that are different in some way or another. Many different things can cause limb differences. Amniotic band syndrome is a common one, but also there are many other syndromes that can cause them as well. Of course accidents or medical amputation can also be the cause of a limb difference. Lamp has a much longer actual diagnosis that you can read about here and the cause was unknown, or in medical terms it was known as a sporadic genetic mutation. Which is cool because it also makes her sound like an X-men character.

Tuesday, April 11, 2017

Knock-Off Artist: Ciao T-shirt

This Little Miggy || Knock-Off artist Madwell shirt
When I first saw this amazing c!ao t-shirt from Madewell a couple weeks ago I was bummed that my size was already out of stock. So obviously I had to make it.

I think it's important to have a quick discussion about being a "knock-off artist." I am a great respecter of art, originality and ideas. First, this is a t-shirt, not a piece of original art. Second, while I am showing you how to make one for yourself, I am not mass making these and trying to sell them as my own. (I see that kind of crap all the time and it really bothers me.)  If this was a small mom + pop shop I might do this for myself, but I probably wouldn't post it on the internet. Still, whenever borrowing ideas (or straight up copying them), I believe in giving credit and/or citing your inspiration source. This shirt was Madewell and it is not my idea! But it's so cute and I was really bummed I missed out on getting one. Additionally, this post is really about the process so even if you don't make this exact shirt, you can make something similar. I will be doing another shirt tutorial down the road so keep your eye out for it!

Really, this is a simple freezer paper stencil, just amped up a bit by using a Silhouette Portrait cutting machine to make those lines really nice and crisp. I can not tell you how much I love my Silhouette. I was gifted one a few years ago and honestly didn't know how much I'd use it...but I use it all the time. They are the absolute best machines for birthday party decor (see here, here and here.) And as you're about to see they make the best stencils ever. I'm going to show you how just using an image online you can copy and trace it into your Silhouette and then cut it out on freezer paper, place on your shirt and iron. You don't need a Silhouette to do this project--you can use an exacto blade and cut it out old school style--but it will take a fraction of the time and make it a lot cleaner looking. And honestly, for any kind of crafter out there, these really are a great investment.

Let's get started! Here are the supplies to make your own c!ao shirt:
Silhouette Cutting Machine or a sharp exacto knife and cutting matte
White t-shirt (mine was from Target)
Freezer paper 
Iron
Fabric/craft paint (I use Martha Stewart's craft paint) + Brush

This Little Miggy || Knock-Off artist Madwell shirt
1. I did a little research and discovered that the font used is Goudy Heavyface. You don't need to buy the font, just a screenshot will work! So search for Goudy Heavyface and take a good screen shot of the entire alphabet. Remember to get the exclamation point!
2. Open your Silhouette Design studio software and open to a new page. Drag your screenshot onto the page. Then your going to select your trace tool. Then click on the "select trace area" button. Once you have that you're going to go over to the lower case c and select the entire c. You'll get some of the other letters next to it as well and that's OK.
3. Before you're finished selecting it, you're going to go the the high pass filter and move it up so that it fills in the entire letter c before you hit trace.
(While you're at it trace your !, a, and o too.)
3. Now, click on the screenshot and delete it. You should have an outline of your c, !, a and o. There will be remnants of other letters to the right and left from each letter. You're going to use the eraser tool to erase the remnants of those letters, so you only have the outline of the c, !, a, and o.
4. Now select each letter, and enlarge each one and move them together so they're the same size and the right width apart. Once you have them all lined up together and the spacing looks right, you'll want to select them all at once (this way they'll move together as a whole, rather than as individual letters) and get them to be the size you want for your T. I ended up making my entire word about 6 inches long.