Friday, April 20, 2018

Special Needs Spotlight || W



Miggy: Tia welcome. So glad to have you talking about your family and especially your son W. Can you take me back to the day W was diagnosed? 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?

Tia: Diagnosing W was a long process. When he went in for his 6 month well check his pediatrician told me that as soon as we got to our new home (we were about to move from Kentucky to Nevada) I should make an appointment right away so they could check his core strength. He was still having a hard time supporting himself. Being as I already had two other kids I noticed he was weaker, but I just assumed it was because he was the third child and always in his car seat or swing or bouncer. But I took her advice and when we finally got settled in and I found a doctor I made an appointment, he was around 9 months. By this point I was worried too because he still wasn't rolling over. My first appointment was scary. I told the doctor what his former pediatrician had said about his weak core and then I added my own concerns that he didn't seem to be using his legs much. You know how most babies bounce up and down when you stand them up on your lap. He never did. And they had very low tone (at the time I didn't really know what that meant) He looked him over, asked lots of questions and then ordered some further testing. I asked him to be honest with me, if he thought it was something serious. He was a little too honest too quick and threw out some pretty big things like, Muscular Dystrophy or Cerebral Palsy.

The next doctors appointment he had lost weight so they did a bunch more testing and I received a phone call telling me they found what looked like Pelger Huet Cells and that may baby might have cancer. Long story short, he did not have cancer, we did every test known to man and found nothing. He started speech therapy, physical therapy 3 times a week and occupational therapy to try to catch him up to where he should be for his age. At 14 months he could not roll over, come to sitting on his own, crawl, walk, nothing. He could sit up slouched over and that's about it. He continued on those and by 19 months because of the most amazing angel of a physical therapist he started walking. His neurologist at that point said he was making enough progress that he thought we could continue on with the therapies and stop testing. Hallelujah, he had been to orthopedic doctors, neurologists, a developmental pediatrician. His own pediatrician pre diagnosed him with 50 billion things that scared me to death. In the end he told me he suspected autism. I was just like, Oh OK. Not believing anything he said anymore, but having to go to him because we are air force. I was so done putting him through the ringer sitting at doctor after doctor just to find that everything looked good on paper. The neurologist did however say at 3 years if he still was not caught up he would recommend genetic testing. So we continued all his therapies until he was 3 and although with speech and a lot of movements he had caught up I still felt in my gut there was something.

Socially he was off. The day I took him to my older daughters field trip and he had many of the same reactions that a little girl with down syndrome in my daughters class had. It was then that I knew I needed to do the genetic testing. At his 3 year well check he ordered the genetic testing. At this point we were in a new state with a new doctor, much more laid back, so when he said it wouldn't be a bad idea, I agreed. On September 11th I got a phone call from the nurse at the geneticist's office. She asked me if it was a good time to talk. All my kids were home, 4 now, W isn't the baby anymore. But I knew that question meant I have bad news. So I sat down at the kitchen table and said yes. She told me W's testing came back and that he had 47XXY. My heart sunk, my very first thought in complete honesty was, "Is he a girl? Part girl? What does this mean?" All I said was OK. She told me not to look it up online and scheduled an appointment the following Monday to talk with the doctor. I hung up the phone and all my kids were looking at me. My oldest two knew something was wrong. But I honestly didn't know what to do or what to say. W had been asking me all day to use the side walk chalk I had bought him earlier, and I kept putting him off. We live in Arizona and it was 100 degrees outside. I sat there wanting to cry but not wanting my kids to see me so I said "Come on guys, we're going outside to use the chalk."

The following months were hard, it was all I could think about. I cried all the time. I felt myself falling into a depression. I would drop the kids off at school and preschool. Put the baby down for a nap and read stuff about it and cry. The geneticist advised me not to tell anyone about it, because it isn't well understood and people might treat W differently. But that was horrible for me, because I needed to talk about it. I needed to work through my emotions and I needed support from friends. So I did tell a few people I felt safe with. It got easier to talk about it without crying. I finally had to snap out of it when I was tucking W in one night and I laughed at something and he said, “Mommy today you are happy, yesterday you were sad.” I knew I needed to find a way to be happy for him. And not worry so much about the future and the unknown.

Now I am much better, he is still W and I wouldn’t change a thing about him. As I said my first thought was if he is part girl, but the geneticists reassured me, “If he has a Y he is boy, boy, boy.” And recently W likes to tell me “Mama I’m a boy” so he is indeed a boy. I just have to not think too much about the future and know that people will come into his life that will see him as I do. Teenage years are hard for everyone but now that we know we can try to make them a little more “normal” for him.
Miggy: I have never heard of 47XXY, could you please educate us about W’s diagnosis and explain how his needs affect your day-to-day life?

Tia:  The syndrome is called Klinefelter Syndrome aka 47XXY. It is possible to have 47XYY or even 49XXXXY and so on, but the more sex chromosomes your born with the more complicated it gets and you are more likely to not be able to learn how to walk and talk and function normally, is my understanding. Mothers have been told in the past from their OB’s to abort their baby because they will be born a monster. W is living proof that that is ridiculously not true! Right now W is pretty “normal” and he is a great kid! Plays by himself, is super sweet to his baby sister. He has a hard time in social situations and large crowds, but we are working on that. His development was delayed and we’ve worked hard with physical therapists and he has learned to use his body like other kids. He had to be taught to do what most kids just learn on their own. Socially he is very introverted. I get strangers telling me a lot that he doesn’t look very happy. He is though, he just lets certain people in and he doesn’t always have a smile on his face but he also rarely throws tantrums or cries. Our battles will come as he gets older and doesn’t go through puberty like other boys. He will most likely develop breast tissue and have wider hips. He won’t produce testosterone and will have to have injections. We have yet to educate ourselves much on that since he is only 4. He will not be able to have biological children. He also will most likely have a lower IQ and possibly struggle with emotional/mental health. Potty training was hard because he had an actual fear of the toilet and the bathroom and would not go into a bathroom. But we overcame that, I just had to try to understand his fear and then help him overcome it.

Wednesday, April 18, 2018

5 Tips for Creating an Art Closet for Kids

This Little Miggy || Art Closet
This post is sponsored by Kid Made Modern. I am so thankful to work with wonderful sponsors here on This Little Miggy as it allows me to continue to make great content. Thank you for supporting sponsors here on This Little Miggy and as always, all opinions are my own. 

"It took me 4 years to paint like Raphael, but a lifetime to paint like a child."
                                                                                        --Pablo Picasso

The process of bringing something into existence that once didn't exist... that magic is called creating. And creating is life. We're meant to create. We're born to create. We need to create. Whether it's cooking, knitting, woodworking, painting, drawing, writing or even building a ramshackle lego house with mismatched bricks on the dining room table, everyone needs to create. We're human. Making sense and beauty out of the world around us is a basic instinct, a means to survive, thrive and feel alive!

Unfortunately the older we get the more we get bogged down with doubt, fear, inadequacy, and the unshakable feeling that whatever we're creating it's not right or it's not enough. Which is why it is so important to let children create as often as possible to help foster the free and easy confidence that comes so naturally in children, with the idea that they will continue to trust in themselves, their vision and what they create, as they continue to grow.

One of the best ways to foster this independent creative spirit is to have art supplies your children can access anytime the need to create strikes. A book shelf in our family room, located right off the kitchen, became our unintended art cabinet. At first I was hesitant to let the kids' art supplies take over my favorite bookshelf, but eventually I realized it was actually the perfect spot and I started keeping it stocked with easy to access art supplies. Today I'm going to share tips on setting up your own art cupboard or closet. You don't have to have a giant closet available, a few shelves or a couple cupboards will do. Likewise, you don't have to have a small fortune in art supplies to put this together. Rather, a well curated collection of the essential supplies is perfect.
This Little Miggy || Art Closet
1. Location, location, location!
The best place to keep art supplies for your kids is close to where you want them making and creating all these beautiful messes. I don't mind if my kids color in their room, but with carpeted floors and pretty duvet covers I don't want them painting or doing elaborate crafts in their rooms. Therefore our art cabinet is located in the family room just off the kitchen. If it's not a drippy kind of messy they can get to work right in front of the cabinet on the carpet, or they can grab a few supplies and carry it over a short distance to the kids table, or just drop onto the hardwood floor and get to work!

This Little Miggy || Art Closet
2. Kid friendly Organization
While my kids are expected to clean up after themselves, it's just not realistic to expect that small children will put markers and crayons back neatly in their boxes. But they can easily put them back in a bin or easy to open storage box of some sort. I used these simple storage pails I got at a craft store and added a reusable chalkboard label and then cleaning up is easy peasy lemon squeezy. I also love that a lot of Kid Made Modern supplies come in their own storage containers like these colored pencils above or the arts and crafts library pictured below.

Tuesday, April 17, 2018

Limb Difference Awareness Month || Q+A Part 2

This Little Miggy || Limb Difference Awareness Month
April is Limb difference awareness month and last year I wrote a couple of pieces about limb differences--Limb Differences 101 and another piece that happens to be a personal favorite about the lack of representation of the disability community and how that lack is felt by us personally.

I recently asked my followers on Instagram to send me their questions about anything at all to do with limb differences, our family dynamics as a special needs family or anything else at all. I answered part some of those questions a couple weeks ago which you can read here, today I'm doing part two of my Limb Difference Awareness month Q+A. Thanks!

*****

Q: My six year old asks this question, are any kids mean or do they think you're cool? I think you are cool because you dance so great and like the Greatest Showman like me!

Answer Lamp: They think I'm cool.

Answer Me: Yes this is true, kids at school think she is very cool. And she is. She has a lot of friends, and many people will tell you she is the most popular girl in school.  (I'm diving a little deeper into this answer below, but I'm not specifically addressing the rest of my answer to the 6 year old who asked this question.  :))

I think this is in part because of the presentation I gave to the entire school at the beginning of the year teaching them about Lamp and her differences, so of course everyone knows her name and they know a little bit about her. The other reason, I believe, is because she is very funny, friendly and outgoing. 

I talk a lot about the fact that when we are out in public other kids tend to point, stare and whisper at and about Lamp. And while this is true, it is also true that as soon as kids get to know her and are educated even briefly about her differences, most of the time they are very accepting. This is one of the big problems I had with the book and movie Wonder (which I forgot to mention it in my original critique). The idea that at the age of 10 Auggie has no friends his own age is absurd to me. Even if he has been home schooled and in and out of hospitals his whole life, this just does not ring true to me or any other special needs family I know. I get that this might feel like a persnickety distinction to make perhaps--on the one hand I am constantly pushing for inclusion and education so that our daughter and other people like her can have access to the same opportunities everyone else has access to, while on the other hand I balk a little at the outdated stereotype presented in movies like Wonder (not because of a 6 year old's question) that people with disabilities are friendless outcasts. But yes, somehow both are true. 


Q: Yes, tell me about household chores! For real, now that we have two kids — one who uses a wheelchair and one that doesn’t — I am not sure about how to handle chores.

So far the regular chores are just for my older two girls, though as I'm writing this I'm realizing that I need to add Zuzu to the chore rotation soon. Both Lamp and her big sister are in charge of doing 3 things each day before school--making their bed, their daily chore (explained below) and practicing their music.

From the time Lamp was about 4 we started helping her learn to make her bed. Her bed is small and low to the ground, but she has been making it herself for years. Of course it takes her much longer on her own, but I think it's important that she spends the time to figure these things out and learns to do it on her own. Because the mornings can be a bit rushed, her dad and I sometimes help her make her bed and by sometimes I mean often--Ha! But again that's because of the morning rush. When she has the time she can and does make her bed very well on her own. 

For their daily chore we have a chore chart that hangs in the pantry door and tells them what they  have to clean each day--Monday thru Friday. All the chores that Lamp has are accessible and something she can do on her own. For example, she cleans the baseboards twice a week, she uses our hand held Dustbuster vacuum to vacuum the bathroom floors (lots of long hair on the floor in our house!) and she also spot cleans the kitchen floor. So yes, all of these are close to the ground, and easy to access for her. Her older sister's chores are things that are higher up and more in her reach--like cleaning the bathroom counter tops and sweeping the kitchen floor. 

Additionally, they are also both in charge of keeping their room picked up and they clean and vacuum it every weekend. Again, we try to keep most of Lamp's toy and clothing storage in reach for her so she can be responsible for picking up. They are also expected to help with setting the table, unloading the dishwasher (Lamp sits on the counter and puts silverware away) and  in general helping me keep the house picked when we have "family pick up time."

I'm a BIG believer in chores and kids pitching in around the house, but sometimes the chores go undone and so they do them in the afternoon or we get off track and have to get back on track, but overall our system works well.
This Little Miggy || Limb Difference Awareness Month
Q: Hi! I was curious as to prosthetics. Or transplant? With all the innovative research happening for folks who lost their ability to walk or use a limb I wondered if that was something that could benefit Lamp?

Friday, April 13, 2018

Special Needs Spotlight || Braden


Hello! It’s so funny to be sharing part of our story here--I remember reading these spotlights years and years ago before I was a special needs mom, and now I see them all with new eyes. My husband and I have four kids with a fifth on the way--Finley (8), Braden (6), Keaton (4), Merritt (2)... and an unnamed baby boy due in June. I used to be the kind of mom I roll my eyes at now--I frequently joke about “when I was a good mom” as I refer to the elaborate parties I threw, the costumes I hand sewed and the marathons I ran (ten of them!)... maybe one day I’ll be a “good mom” again, but for now I’m focused on trying to keep my kids alive and make sure they all live their best lives (whatever that means for each of them!) We lived a fairly normal, non-special needs life until July 4, 2016, when Braden (then 5) became sick… and sicker… until he was life flighted to a major hospital, intubated and eventually diagnosed with Acute Flaccid Myelitis, a polio like disease that paralyzes children. We’ve spent the last two years learning to navigate life with a kid with a trach, feeding tube and power chair while trying to be decent parents to the rest of our crew. Everyone is alive, so I think we’re succeeding. You can follow our story on Braden’s Facebook page, or my Instagram.
***************

Miggy: Hi Rachel and welcome. I’m so glad you’re here today to talk about your son Braden and your very sudden and unexpected foray into special needs parenting. Can you take me back to when everything changed for Braden and your family? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Rachel: Braden was born perfect. He was 8 pounds 11 ounces and 23 inches long--and he scored a perfect 10 on his Apgar. Based on the snapshot of him at birth, you'd think it would be smooth sailing with him. But when he was two, he started to have some concerning behaviors, and was eventually diagnosed with Aspergers at age 4. We threw ourselves into therapies and plans for him--but it all got pushed to the back burner a few months after he turned 5. A routine cold landed him in the ER where he continued to deteriorate. He was initially struggling because he couldn't swallow anything and was diagnosed with strep. But he continued to lose strength, even with high doses of antibiotics and steroids. Within a few days, he stopped breathing and was life flighted to a major hospital in Houston. We went from a perfect kiddo to a paralyzed little boy dependent on a ventilator to breathe within a few days.

As we watched Braden move less and less, we continued to wait for a diagnosis. We'd attributed his waning strength to not eating for a week--in actuality, a virus had been wreaking havoc on his spinal cord, damaging the anterior horn cells and leaving him paralyzed. He was eventually diagnosed with Acute Flaccid Myelitis--a new rare diagnosis that has affected a few hundred children over the last few years. (Cases tend to spike in the summers of even years--so if your child shows signs of weakness following a cold--take it seriously!!) The first weeks were terrifying--he was trached and on a ventilator and there were moments we could have lost him. And then the realization set in that he wasn't going to bounce back to his old self--he'd probably leave the hospital in a wheelchair, with a vent and feeding tube. That was terrifying. A whole new world opened up to us.

Two years ago, I think we assumed things would be better than they are now (which is a depressing answer!) If you would have told me that almost 2 years later, he'd still have lots of areas of weakness and paralysis, still be unable to swallow a thing and still have the trach, I think I would have been completely overwhelmed. It's God's grace that we couldn't see the future and only had to worry about the very next thing. I wish I knew what course his recovery will take, but I think not knowing protects us and pushes us to do our very best with him. The trach is no longer scary--we can suction and change it in our sleep (and have done that!) and we’re getting used to functioning as a family with a kiddo with special needs. (We killed it at Disney World a month ago!)
Miggy: Will you please educate us about Acute Flaccid Myelitis and explain how it affects Braden's needs and your day-to-day life?

Rachel: Acute Flaccid Myelitis affects kids very differently--some children are only affected in one limb and make great recoveries while others are affected everywhere and make very little progress. Braden is somewhere towards the more extreme side--he was affected absolutely everywhere--at his worse, he was completely paralyzed, unable to swallow or breathe. We're so grateful that he's made lots of progress in lots of places. He remains weak everywhere, but is able to walk with assistance. His right arm is still mostly paralyzed, as is his left diaphragm, left anterior tibialis and some neck muscles. He still has a trach, and only uses his ventilator at night. He still can't swallow anything (not even his spit!) so he's tube fed and we suction spit out of his mouth every few minutes.

Braden spent the first seven months after onset in a hospital--first an ICU and eventually a rehab facility. He came home with 24 hour nursing care--something that has been a lot to adjust to! Our nurses are great--they help us keep him healthy and do a lot of his home therapy with him. Having full time nursing has been a huge adjustment--even though our nurses are lovely, it still makes you feel like you need to be “on” all day--a good mom, keeping a clean house and looking put together all the time. I gave that up fairly quickly, luckily!

Monday, April 09, 2018

Macro Training + Pull -Up Report

In January I started working with Amber of Biceps after Babies to help achieve my goals of completing 10 pull-ups (which are actually chin-ups but since a lot of people are like, 'What are chin-ups?' I refer to them pull-ups) as well as to get a little leaner by increasing my muscle mass and at the same time getting better control of my sugar habit. This post is in partnership with Biceps After Babies. Thanks for supporting sponsors here on TLM. 

I'm here to report on my 9 weeks of working with Amber of Biceps After Babies to see how I did with my 3 goals which were:

1. Get leaner--lose fat, gain muscle.
2. Have more control over my sugar habit.
3. Be able to do 10 pull-ups.

As a quick refresher, some of you may remember that I made a goal for myself to do 10 pull-ups by my 40th birthday (January of 2017). I did not make that goal, but I did make some good progress. When I first started I could do 0 pull-ups. By the time my 40th birthday hit my all time high was 4 pull-ups--which I only reached 1 time. Most days I could only do 2 with the occasional 3. When I set the goal of 10 pull-ups I decided that I would "work out more" and "eat more protein." Admittedly, those were rather ambiguous goals.

Well 41 came and I could barely even do 2 pull-ups. I was still working out regularly, including focused arm workouts, and my eating habits and weight hadn't changed, so I didn't really know what to do. Except I knew exactly what I needed to do. I needed to hire someone with professional knowledge to help me achieve this goal.

I started following Amber of Biceps After Babies on Instagram and really liked her approach to fitness and health. She is very body positive and encourages you to love the body you have, while working towards your fitness goals. She specializes in macro coaching. To understand more about counting macros I'll point you toward Amber's site, but here is my explanation: macro coaching is teaching people how to count and track their macros--fat, carbs and protein--as a sustainable means of having a healthy and well balanced diet. It is similar to counting calories, but is even more effective as it takes into account what kind of calories you are eating.

Why would someone want to count their macros? 

Good question. When I first started following Amber, I didn't know why someone would want to do this either. Was this a fad diet? Was it another form of paleo, keto, frito and dorito? No, as it turns out. While I've always considered myself a healthy eater as a lover of vegetables and lean meats, I've also got a raging sugar tooth and didn't really know what healthy limits of sugar (carbs) looked like for me. When I said I was going to "eat more protein" I eventually realized I had no idea how much protein I was eating in the first place and how much more I needed to eat. I knew that the biggest missing piece of the puzzle in my 10 pull-up goal was my lack of nutritional information and I believed that working with Amber and tracking my macros would help. Boy did they ever! (That's dramatic foreshadowing.) 
The Program
You start the program by filling out some information like height, weight, as well as measurements around your waist, hips, chest, legs, arms, etc. You also take a photo of yourself in a bikini or underwear. And it's good to get comfortable with all of this because you'll be sending in measurements and photos every week. However, Amber also asks about your goals--are you focused on weight loss, muscle gain, both? Do you have a specific fitness goal? She asks questions delving deep into the nitty gritty of why you've come to her, because counting macros isn't always about losing weight and cutting your food intake. You set your macros according to your goals.

Next, she sends you a welcome packet that answers a lot of general questions, gives you some tips to get started (equipment, tools, etc) and she also sends you your custom macros that she sets based on your body type and goals. What this means is she sends you the numbers you're going to try to hit everyday to eat for your protein, fat and carbs. As I said, your macros will change depending on your goals. For me and the goals we discussed, it was decided that at first I needed to undergo a "cut."

And then I was like, wait a second...am I on a diet? I don't diet!!! I eat a healthy and well balanced diet. I don't need to be ON a diet.

So I talked with Amber. That's when she explained this concept of macro eating being flexible and not static. Yes, for a short period of time I was going to restrict my overall calorie intake, while significantly increasing my protein and lowering my carbs and fat. So yes, strictly speaking I was going on a diet.

BUT--here is the big difference--this was not a diet in the sense that any certain kind of food was suddenly off limits. I have no problem with vegan, vegetarian, sugar free, keto, paleo diets for anyone else, but they're not my jam. And I had no desire to radically change my diet. With macros you can eat however you want--as long as you stay within your macro and calorie count. Of course this means that to hit your macros you will need to eat mostly healthy foods, but you can still have sweets and sugars if it fits your macros, or IIFYM as the saying goes. If you want to eat vegan and count your macros you can. If you want to eat paleo and count macros you can. If you want to eat all the things and count your macros you can do that too.

At first these numbers are pretty meaningless. 130 grams of carbs a day? What does that look like? How much of what kind of food can I have? I was nervous the night before I started. How hard would it be and would this enough food to sustain me during the day?

Support
Even something flexible like macro tracking has a learning curve to it, especially since for most people you are trying to really increase your protein intake and you don't always know where to begin. Amber sends a newsletter each Monday with tips, recipes, and encouragement. And she also frequently features macro friendly blogs with recipes on her Instagram page.

Thursday, April 05, 2018

Special Needs Spotlight || Jessica

Jessica Smith is an accomplished speaker and MC. The former Paralympian represented Australia for seven years in the sport of swimming. Since retiring from international competition she has dedicated her life to raising awareness around Mental Health and Mental Illness with specific emphasis on body image and eating disorders. Her aim is to highlight that Mental Health is about wellness, rather than illness.


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

Miggy: Jessica, welcome! Thank you so much for agreeing to be interviewed on my blog and for sharing your experience as a congenital amputee, burn victim survivor, Paralympian, and motivational speaker! Let's jump back to your early childhood--not only were you born "missing" your left arm, but when you were 18 months old you accidentally knocked over a kettle of boiling water and suffered third degree burns on 15% of your body. Wow. Do you remember when you first became aware that you were different from your peers? What did that feel like and how did that shape you? Looking back do you have a different perspective of your childhood and how those years shaped the person you are today?


Jessica: From as far back as I can remember I always knew that I was different. I have vivid memories before I even started school, of feeling very uncomfortable because I didn't look like other kids. Of course as I got older, and certainly when I reached my teenage years, I became ultra aware of my body and the fact that I didn't fit societal norms. I grew up in a rural town, there were no other kids with a disability, and I think the lack of diversity that I saw every day, made me even more upset about my own differences. High school can be an awkward time for anyone, but for me, it was unbearable on so many levels. I wanted so much to be 'normal' but I wasn't. I was shy and reserved, because I never wanted to draw attention to myself, yet on the flip-side, I wanted to be recognized - but for something other than my disability and scars. My self esteem and confidence were low, and it therefore became easy for me to use negative language toward myself. On a daily basis I would tell myself how pathetic I was, and how ugly and fat I was. But somewhere deep inside there was also a hint of resilience. I was able to focus my thoughts and feelings on playing sport, and it was swimming that I fell in love with. A sport where I could express myself and the pool was a place where I felt free. I'm now 33, and can honestly say that every aspect of my childhood and teenage years has contributed to the person I am today.
Miggy: Can you tell me what your family life was like growing up? Did you have great support from your parents and siblings? Was there anything you wish they would have done differently?

Jessica: I grew up in a very loving and fun family. I have three younger brothers, and our parents literally provided us all with the most amazing upbringing. Of course growing up is challenging for anyone, but I certainly had moments where I felt jealous of my brothers because to me, their lives were easy. I do remember a time when I was very angry and confused at the world. I had so many questions that I wanted my parents to answer, but they couldn't.

For example, Why me? Why did I have to be the 'different' one.

There was a period of my life when my mum thought it would be best to practice tough love, and by that I mean, she never wanted me to feel sorry for myself or for anyone else to feel sorry for me. So I wasn't allowed to make excuses for myself. These days I appreciate what she did, it helped build resilience. However, some days I wish she had of just empathized with me more.

As a parent now myself, I understand that all parents do the best they can with the resources they have available to them at the time. My parents did the best they could to help me develop into my own person. One thing I am so very grateful for, is their determination to ensure that I did things for myself. My mum knew when I was young that the world would eventually move beyond pen and paper, so she insisted that I learn to type. And type fast! This is just one example, but basically they made sure I wasn't going to get left behind, and I'm so grateful for their foresight.

Sometimes though I would have loved a little more empathy, often when I was struggling to do something no one would help me, and although I appreciate the benefits from this, it would have been nice to have felt a little more emotional support when I struggled to do things.

Tuesday, April 03, 2018

Limb Difference Awareness Month || Q+A

This Little Miggy || Limb Differences Q+A
April is Limb difference awareness month and last year I wrote a couple of pieces about limb differences like Limb Differences 101. The other piece I wrote was a personal favorite that has to do with the lack of representation and how that lack is felt by us personally. It's probably one of my favorite pieces I wrote all last year, if you have a minute I would encourage you to read it. It will help you understand why I work so hard to spread awareness.

But today I'm going to answer some more specific questions. I asked my followers on Instagram to send me their questions they have about anything at all to do with limb differences, our family dynamics as a special needs family or anything else at all. I got some great questions so I'm going to take a few minutes and answer some of them this morning.

*****

Q: "How would Lamp like us to refer to her body when we are introducing our kids to difference? Any guidance on "in a perfect world" how would your fellow parents discuss/represent Lamp to/with their children?" And "I would love to know what you would hope we would teach our children about limb differences. I always tell my girls to have compassion but people don't always want you to feel sorry for them because they are happy! Does that make sense?"

A: Great questions! The first thing I have to say is KUDOS for talking to your kids about Lamp and other people with disabilities in the first place. It is not enough to tell our kids to "be nice" when we send them off to school or the playground. Kids need to be educated about disability in order to "be nice." As I have seen many, many times when kids see someone like Lamp for the first time they have questions! And concerns! And even fears! And it's really hard to remember to "be nice" when all this is swirling through your young mind for the first time.

Second, I'd like to point you toward my guide for navigating a special needs encounter. This is my 4 step plan for handling a situation when your child is meeting another child who has special needs for the first time like at the playground or in the grocery store. But it is also a great overall guide for how I'd like people to talk to their kids about children and people with disabilities.

The first step of the plan is to stay (as opposed to shushing your child and walking away) and have a conversation about disabiliy. In specific reference to "How would Lamp like us to refer to her body when we are introducing our kids to difference?" I would encourage you to use the term limb difference. Just like if you meet a kid who has Down syndrome, it would be appropriate to say "She has Down syndrome." In a very straightforward yet kind way. We are not embarrassed or ashamed of our kids differences, or their diagnosis. To call it what it is, is a good thing! It helps de-stigmatize disability as something bad that we only say in hushed tones with a sad voice. As far as the "why" I always say she was just born this way, or this is how God made her. (Of course some people become disabled through illness or accident, but I'm being very general and broad.)

The next part of my 4 step plan is then finding common ground. It's good to talk about their disability in a frank, yet still kind tone, but then helping your child see that they are more alike than different is key. The last two steps are emphasizing kindness/using kind words, and emphasizing her strengths and the fact that she is differently-abled. Reading that 4 step approach is my best all-over guide for talking to kids about differences.

As for teaching our children compassion, you are 100% right that Lamp and other kids like her don't want people to feel sorry for them. Compassion is a wonderful trait for all people to have, however it seems that compassion and pity can be pretty easily mixed up. And not just for young children, but for adults as well. While I can be hard to understand this from the outside, I can't emphasize enough how pity is more difficult to deal with and more devastating than disability itself. I would say that instead of teaching compassion, teach kindness. The definition of compassion says, "sympathetic pity and concern for the sufferings or misfortunes of others. 'the victims should be treated with compassion.'" Teaching compassion in terms of disability means that others assume my daughter is suffering and views her body and her overall life as a misfortune. Obviously, I don't think you are teaching your children this. I can tell by the nature of your question that you are very careful to teach your children well,  so perhaps this is a matter of semantics, but if I could redirect the idea of compassion to the idea of kindness I think that is a better fit.